The First Seizure Clinic - Swinburne Research Bank

The First Seizure Clinic: Psychosocial characteristics of patients

and the effect of an epilepsy support program

Rosemary Panelli

A thesis submitted in fulfilment of the requirements for admission to the degree of Doctor of Philosophy of

Swinburne University of Technology

2010

Abstract

Epilepsy is a lower prevalence, episodic condition with points of initiation or remission

difficult to identify. Consequently, truly representative community research samples are rare.

Reliance on data from specialist centres or support groups may give an inaccurate overview

of psychosocial outcomes. This thesis has addressed issues of diagnosis and management

of seizure patients through its examination of psychosocial characteristics of First Seizure

Clinic patients at diagnosis and follow up over 12 months, and through its evaluation of

a support program for a subgroup of these patients. Such early data provide a valuable

baseline for gauging the longitudinal impact of seizures and their treatment on psychosocial

well-being. The inclusion of all First Seizure Clinic patients regardless of diagnosis also

allowed comparisons between patients with and without seizure-related diagnoses on well-

being measures. The use of a randomized controlled trial (RCT) to evaluate the support

service for seizure patients was an innovative feature of the research, as was an evaluation

of the Liverpool Adverse Events Profile (LAEP), a measure for side-effects of antiepileptic

drugs.

The study cohort (N=245) had a mean age of 36.5 (±15.9) years with two thirds male.

Thirty percent of participants received a non-seizure diagnosis. After categorization as

seizure, epilepsy, syncope or other, there were no demographic differences between the

categories. Measures of ill-being and well-being were generally aligned and did not differ

between diagnostic categories. Over time, all diagnostic groups showed significant falls

in past worry and future worry, however their levels of anxiety and depression were up

to twice that of the Australian community. For the RCT, only seizure / epilepsy patients

were included (N=167). There were no differences between the control and intervention

groups over 12 months for the eight key quantitative variables, or for satisfaction with the

clinic service. However, when asked about sources of health information, and in response

to qualitative investigation, the intervention group rated the support worker as the most

used source, and as highly valued. The LAEP evaluation found it to be more informative

when used as a repeated measure of specific symptoms than as a global score. Even so the

constructs assessed by LAEP were largely reflected in measures of anxiety and depression.

ii

Anxiety and depression were notable features of the First Seizure Clinic cohort regardless

of diagnosis thereby raising the question of how best to identify and manage these

conditions for all patients in such a setting. In seizure patients, the support program did

not demonstrate positive effects on the key psychosocial outcomes, but likewise it did not

indicate harm. Questioning of patients regarding their use and value of the service revealed

a strong, positive response which, while encouraging, needs further exposition. These

data and the methodology modelled provide a valuable basis for ongoing investigation of

anxiety and depression associated with seizures. Given the strong relationship demonstrated

between anxiety, depression and the reporting of antiepileptic drug (AED) effects, it also

underscored the need to develop robust measures for assessing AED effects.

iii

Acknowledgements

This PhD research project was funded by the Australian Research Council in conjunction

with the Epilepsy Foundation of Victoria (EFV) and Swinburne University of Technology.

It was the creative thinking and passion of Russell Pollard, combined with the enthusiastic

support of Professor David Hayward, Professor Sue Moore, Professor Mark Cook, Dr

Lindsay Vowels, and Dr Christine Walker which brought this partnership to fruition.

Funding for psychosocial research in epilepsy is sparse, and I have been privileged to be

part of this initiative.

In supervision, I was fortunate to have Sue Moore as my guide through the protocols of

academia. Her wise insight, perfectly measured assessments, timely direction, patience

and humour kept me going. My co-supervisor and epilepsy mentor was Professor Terence

O’Brien. His abundant enthusiasm and faith in the research gave me confidence in myself

and in the project. When I might have held back, he encouraged me to put the work

forward at conferences, and to submit to journals, with positive results.

The research was based at The Alfred and the Royal Melbourne Hospital. The staff were

always keen to assist and I was grateful for the support of Professor Christine Kilpatrick, Dr

Wendyl D’Souza, Dr Zelko Matkovic, Dr Mike Salzberg and Professor Frank Vajda.

A research thesis may be published under one name but so many contribute to the result. I

want to thank especially, librarian Pauline Brockett, an indefatigable woman who lovingly

nurtures the treasure which is the Epilepsy Foundation of Victoria library. All my colleagues

at EFV and Epilepsy Australia deserve my thanks, especially Margot Boyle, Jeremy Maxwell,

David Stamford and Louise Maniatakis. Others interstate and overseas such as Kay

Elphinstone, Jennifer Preston, Margaret Kyrkou, Joyce Cramer, Anne Berg, Ann Jacoby and

Jane Hanna continue to inspire me.

Professional design, style guidance and proof reading, was provided most astutely by editor

Denise Chapman.

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Much of what I know about epilepsy has been learnt from the people who actually have the

condition and their families, many bereaved through epilepsy. Some became volunteers and

colleagues at EFV. It is not possible to list you all by name but I thank you for everything

you have taught me. There are two such people with whom I have a unique bond because

this project is their project also. Maree Kearton and Mark Green have been part of the

First Seizure Clinic support service from the beginning. They were there when the research

project was designed and they have carried it forward faithfully. Without their commitment

there would be no thesis.

While I was working on this project, I moved from house to house, from marriage to

divorce and on to marriage again, and from city to country living. My worldly goods may

have reduced with every move, but the number of filing cabinets kept increasing. My

family and friends have been ever supportive, always enthusiastic, and willing to help with

anything. Thank you Jenny & Lins, Keith & Ong, Suzie, Julie & Rod, Heather, Jeanette

& Rob, Felicity, Gordon & Chin, Traude, Denise & Ray, Sculley, Marg, Allison, and my

Seymour friends. Keata and Lynden are greatly missed. My daughter Hannah and my son

Francis have always encouraged me. They are special people whom I love and respect. My

husband Robert has been my optimistic companion in life for the last three years, constantly

believing in me. I love you doc.

In conclusion, I recognize the debt I owe to the patients of the First Seizure Clinic who

generously agreed to share their experiences with me at a time of stress and uncertainty in

their lives. I am grateful for their trust and willingness to act as partners in research.

v

Declaration of Originality

This thesis contains no material which has been accepted for the award of any other degree

or diploma in any university except where due reference is made in the text of the thesis. To

the best of my knowledge, this thesis contains no material previously published or written by

another person except where due reference is made in the text of the thesis.

Rosemary Panelli

vi

Abstract ...............................................................................................................................................ii

Acknowledgements ...........................................................................................................................iv

Declaration of Originality ...............................................................................................................vi

Contents ............................................................................................................................................vii

Figures...............................................................................................................................................xvi

Tables ...............................................................................................................................................xvii

1 INTRODUCTION

1.1 Overview ............................................................................................................................1

1.2 Background ........................................................................................................................1

1.3 Aims ....................................................................................................................................4

1.4 Research approach ............................................................................................................4

1.5 Outline of thesis ................................................................................................................5

2 SEIZURES AND EPILEPSY

2.1 Introduction .......................................................................................................................7

2.2 Definitions ..........................................................................................................................7

2.2.1 Seizure ..................................................................................................................7

2.2.2 Epilepsy ................................................................................................................8

2.3 Classification ......................................................................................................................9

2.3.1 Seizures ................................................................................................................9

2.3.2 Epilepsy Syndromes ...........................................................................................9

2.4 Causes of seizures and epilepsy .....................................................................................10

2.5 Epidemiology ...................................................................................................................12

2.5.1 Prevalence ..........................................................................................................13

2.5.2 Incidence ............................................................................................................13

2.5.3 Mortality ............................................................................................................15

2.6 Impact of seizures and epilepsy ....................................................................................16

2.6.1 Comorbidity ......................................................................................................16

2.6.1.1 The effect of AED treatment .........................................................18

2.6.2 Burden of disease in epilepsy .........................................................................19

2.7 Diagnosis ..........................................................................................................................20

2.7.1 Overview ...........................................................................................................20

Contents

vii

2.7.2 Differential diagnoses ......................................................................................21

2.7.2.1 Syncope ............................................................................................21

2.7.2.2 Reflex anoxic seizures....................................................................22

2.7.2.3 Panic attacks ...................................................................................22

2.7.2.4 Non-epileptic seizures ...................................................................22

2.7.2.5 Other possible diagnoses ..............................................................23

2.7.2.6 Medically unexplained symptoms ...............................................23

2.7.3 Investigations ....................................................................................................24

2.8 Treatment..........................................................................................................................24

2.8.1 The decision to commence treatment ...........................................................24

2.8.2 Is treatment lifelong? .......................................................................................26

2.8.3 The use of antiepileptic drugs ........................................................................26

2.8.4 Additional treatment options .........................................................................27

2.9 Summary ...........................................................................................................................27

3 PSYCHOSOCIAL SEQUELAE OF SEIZURES AND EPILEPSY

3.1 Introduction .....................................................................................................................28

3.2 An historical perspective ................................................................................................28

3.3 Contemporary research ..................................................................................................29

3.4 Psychiatric disturbance ...................................................................................................31

3.4.1 Depression .........................................................................................................32

3.4.1.1 Depression in epilepsy ..................................................................34

3.4.2 Anxiety..... ...........................................................................................................38

3.4.2.1 Anxiety and epilepsy ......................................................................38

3.5 Stigma ...............................................................................................................................40

3.5.1 Stigma and epilepsy ............................................................................................41

3.6 Summary ...........................................................................................................................44

4 FRAMEWORKS FOR THE MANAGEMENT OF SEIZURES AND EPILEPSY

4.1 Introduction .....................................................................................................................46

4.2 An historical perspective ................................................................................................46

4.3 Current epilepsy care ......................................................................................................47

4.3.1 Seizures in the Emergency Department .......................................................47

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Contents

4.3.2 Medical services for epilepsy ..........................................................................48

4.3.3 Public health policy: political and social factors ..........................................51

4.3.4 Epilepsy as a chronic condition .....................................................................53

4.3.5 Raising the profile of epilepsy care ...............................................................56

4.4 Guidance for epilepsy care ............................................................................................57

4.4.1 Evidence for guidelines ...................................................................................57

4.4.2 The content of guidelines ...............................................................................59

4.4.2.1 UK guidelines .................................................................................59

4.4.2.1a National Service Frameworks ...................................59

4.4.2.1b Scottish Intercollegiate Guidelines Network .........60

4.4.2.1c National Institute for Health and Clinical

Excellence .....................................................................61

4.4.2.2 American guidelines .......................................................................62

4.4.2.3 Australian guidelines ......................................................................63

4.4.2.4 Emphasis on social and psychological care ................................64

4.5 Summary ...........................................................................................................................65

5 INFORMATION AND SUPPORT FOR SEIZURE AND EPILEPSY PATIENTS

5.1 Introduction .....................................................................................................................67

5.2 The development of health information and support services ...............................67

5.3 The need for epilepsy information and support services ........................................68

5.4 Sources of epilepsy information and support ............................................................71

5.4.1 Health professionals .........................................................................................71

5.4.1.1 Doctor ..............................................................................................71

5.4.1.2 Nurse ................................................................................................73

5.4.1.3 Psychologist.....................................................................................75

5.4.1.4 EEG technician ..............................................................................75

5.4.1.5 Pharmacist .......................................................................................76

5.4.1.6 Other health professionals ............................................................76

5.4.2 Community based health organizations ........................................................77

5.4.3 Peer programs ...................................................................................................79

5.4.3.1 Peer support ....................................................................................79

5.4.3.2 Peer education ................................................................................80

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Contents

5.4.4 Self-management programs ............................................................................82

5.4.5 Independent searching .....................................................................................84

5.4.5.1 The internet .....................................................................................86

5.5 Summary ...........................................................................................................................88

6 SUMMARY OF LITERATURE AND REVIEW OF RESEARCH OBJECTIVES

6.1 Introduction .....................................................................................................................91

6.2 Chapter 2 ..........................................................................................................................91

6.3 Chapter 3 ..........................................................................................................................92

6.4 Chapter 4 ..........................................................................................................................93

6.5 Chapter 5 ..........................................................................................................................95

6.6 Key points ........................................................................................................................95

6.7 Research response ...........................................................................................................96

6.8 Summary ...........................................................................................................................99

7 METHODOLOGY

7.1 Introduction ...................................................................................................................100

7.2 A study of First Seizure Clinic patients .....................................................................100

7.2.1 Rationale and development ...........................................................................100

7.2.2 Location ...........................................................................................................102

7.2.3 Study population .............................................................................................102

7.2.4 Clinic structure ................................................................................................102

7.2.5 Recruitment .....................................................................................................103

7.2.6 Exclusions ........................................................................................................103

7.2.7 Allocation to diagnostic categories ..............................................................104

7.2.8 Participants ......................................................................................................104

7.2.8.1 Exclusions and refusals ................................................................104

7.2.8.2 Diagnostic categories ...................................................................105

7.2.8.3 Age ..................................................................................................105

7.2.8.4 Gender ............................................................................................105

7.2.9 Data management...........................................................................................106

7.2.9.1 Data collection ..............................................................................106

7.2.9.2 Data storage ...................................................................................106

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Contents

7.2.10 Outcome measurement .................................................................................107

7.2.10.1 Overview ........................................................................................107

7.2.10.2 Demographic measures ...............................................................110

7.2.10.3 General health scale .....................................................................110

7.2.10.4 Global quality of life scale ..........................................................110

7.2.10.5 Worry scale ....................................................................................111

7.2.10.6 Hospital Anxiety and Depression Scale ....................................112

7.2.10.7 Stigma scale ...................................................................................112

7.2.10.8 Liverpool Adverse Events Profile ..............................................113

7.2.10.9 Health information sources ........................................................114

7.2.10.10 Clinic service – service satisfaction scale ..................................114

7.2.10.11 Clinic service – open ended questions ......................................115

7.3 A Randomized Controlled Trial to assess a support program in First Seizure Clinic

patients ...........................................................................................................................116

7.3.1 Randomization ................................................................................................117

7.3.1.1 Doctor blinding ............................................................................118

7.3.1.2 Patient blinding .............................................................................119

7.3.2 Control group protocol .................................................................................119

7.3.3 Intervention group protocol .........................................................................120

7.3.3.1 Overview .......................................................................................120

7.3.3.2 The support workers ...................................................................120

7.3.3.3 The first consultation ..................................................................121

7.3.3.4 Maintaining consistency ..............................................................122

7.3.3.5 Educative materials .....................................................................123

7.3.3.6 Follow up calls ..............................................................................123

7.4 Statistical analysis ...........................................................................................................123

7.5 Summary .........................................................................................................................124

8 RESULTS 1 A PROSPECTIVE EVALUATION OF FIRST SEIZURE CLINIC PATIENTS OVER 12 MONTHS

8.1 Introduction ...................................................................................................................125

8.2 Outcome measures........................................................................................................125

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Contents

8.2.1 Preliminary analysis of data ..........................................................................126

8.2.2 Statistical normality ........................................................................................126

8.3 Descriptive data .........................................................................................................128

8.3.1 Overview of cohort .......................................................................................128

8.3.2 Participants withdrawn or lost to follow up ...............................................128

8.3.3 Diagnostic categories .....................................................................................130

8.4 Evaluation – baseline ....................................................................................................131

8.4.1 Relationship between age, gender and dependent variables ...................131

8.4.2 Overview of cohort ......................................................................................132

8.4.3 Diagnostic group differences........................................................................134

8.5 Evaluation – longitudinal ............................................................................................135

8.5.1 Cohort changes over twelve months ...........................................................135

8.5.2 Comparison of diagnostic categories over twelve months ......................139

8.6 Correlation analysis .......................................................................................................140

8.7 Summary .........................................................................................................................141

9 RESULTS 2 NEW-ONSET SEIZURES AND EPILEPSY – A RANDOMIZED CONTROLLED TRIAL TO EVALUATE A PATIENT SUPPORT PROGRAM

9.1 Introduction .........................................................................................................144

9.2 Overview of the randomized controlled trial (RCT)...............................................144


9.3.1 Statistical normality ........................................................................................146

9.4 Descriptive data .........................................................................................................147

9.4.1 The seizure/epilepsy sample ........................................................................147

9.4.1.1 External comparisons ..................................................................148

9.4.2 The intervention and control groups ..........................................................150

9.4.2.1 Diagnoses ......................................................................................150

9.4.2.2 Age..................................................................................................150

9.4.2.3 Gender ...........................................................................................151

9.4.2.4 Social background ........................................................................151

9.5 RCT evaluation – psychosocial well-being and the adverse effects of

medication............. ........................................................................................................152

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Contents

9.5.1 Baseline assessment ........................................................................................152

9.5.2 Longitudinal assessment ................................................................................152

9.6 RCT evaluation – sources of health information for patients ...............................157

9.7 RCT evaluation – patient responses to the service ..................................................159

9.7.1 Service satisfaction scale ................................................................................159

9.7.1.1 Correlations between the service satisfaction scale and other

measures ........................................................................................160

9.7.2 Open-ended questions ...................................................................................160

9.7.2.1 Responses – three months ..........................................................160

9.7.2.2 Responses – twelve months ........................................................162

9.8 Summary................. ........................................................................................................163

10 RESULTS 3 AN INVESTIGATION INTO THE LIVERPOOL ADVERSE EVENTS PROFILE

10.1 Introduction ...................................................................................................................165

10.2 Rationale for LAEP investigation ...............................................................................165

10.3 Framework of the study ...............................................................................................166


10.5 Descriptive data .............................................................................................................168

10.6 AED use .........................................................................................................................169

10.7 Evaluation .......................................................................................................................169

10.7.1 LAEP – symptom frequency ........................................................................169

10.7.2 LAEP – global scores ....................................................................................172

10.7.3 HADS scores ..................................................................................................172

10.7.4 Correlations between AED status, LAEP, and HADS ............................173

10.7.5 Predicting LAEP scores ................................................................................173

10.7.6 Relation of anxiety and depression to specific symptom reporting .......174

10.8 Summary .........................................................................................................................175

11 DISCUSSION AND CONCLUSIONS

11.1 Introduction ...................................................................................................................177

11.2 Review of study aims ....................................................................................................177

11.3 Summary and discussion of study aims .....................................................................178

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Contents

11.3.1 Chapter 8 .........................................................................................................178

11.3.2 Chapter 9 .........................................................................................................183

11.3.3 Chapter 10 .......................................................................................................186

11.4 Strengths of the study ..................................................................................................187

11.4.1 Overview ..........................................................................................................187

11.4.2 Recruitment .....................................................................................................187

11.4.3 Outcome measures .........................................................................................188

11.5 Limitations of the study ...............................................................................................189

11.6 Implications of the study results ................................................................................192

11.7 Recommendations .........................................................................................................196

11.8 Future Directions ..........................................................................................................197

REFERENCES ...........................................................................................................................201

APPENDICES ...........................................................................................................................227

APPENDIX A – PATIENT INFORMATION BROCHURE ...............................227

APPENDIX B – ETHICS CERTIFICATES & ENDORSEMENTS

B1 The Alfred ................................................................................................................237

B2 The Alfred – amendments .....................................................................................238

B3 Swinburne University ............................................................................................239

B4 Royal Melbourne Hospital ....................................................................................240

B5 The Epilepsy Foundation of Victoria.................................................................241

APPENDIX C – INFORMATION MATERIAL & CONSENT FORMS

THE ALFRED

C1 Welcome letter ........................................................................................................242

C2 Information for Patients .......................................................................................243

C3 Consent Form .........................................................................................................245

C4 Third party Consent Form ...................................................................................246

C5 Revocation of Consent Form ..............................................................................247

C6 Three month follow up letter ...............................................................................248

C7 Twelve month follow up letter .............................................................................249

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Contents

APPENDIX D – INFORMATION MATERIAL & CONSENT FORMS

ROYAL MELBOURNE HOSPITAL

D1 Welcome letter ........................................................................................................250

D2 Participant letter .....................................................................................................251

D3 Consent Form .........................................................................................................253

D4 Third party Consent Form ...................................................................................254

D5 Revocation of Consent Form ..............................................................................255

D6 Three month follow up letter ...............................................................................256

D7 Twelve month follow up letter .............................................................................257

APPENDIX E – SCALES & ITEMS

E1 Scales and Items used for Baseline ......................................................................258

E2 Scales and Items used at 3 months ......................................................................262

E3 Scales and Items used at 12 months ...................................................................267

APPENDIX F – CLINIC CHECK LIST ......................................................................272

APPENDIX G – PATIENT RESOURCE LIST .........................................................273

APPENDIX H – FSC ANXIETY & DEPRESSION

H1 FSC Anxiety – case distribution for diagnostic groups in repeated measures

samples ...................................................................................................................274

H2 FSC Depression – case distribution for diagnostic groups in repeated

measures samples ...................................................................................................274

APPENDIX I – FSC MEAN SCORES REPEATED MEASURES SAMPLE ......275

APPENDIX J – CORRELATIONS CHAPTER 8

J1 FSC Correlation Analysis – 3 months ................................................................277

J2 FSC Correlation Analysis –12 months ...............................................................277

APPENDIX K – CORRELATIONS CHAPTER 9

K1 RCT Correlation Analysis – 3 months ..............................................................278

K2 RCT Correlation Analysis – 12 months .............................................................278

APPENDIX L – PUBLICATIONS .................................................................................279

ABBREVIATIONS ...................................................................................................................280

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Contents

Figure 1. First Seizure Clinic study framework flowchart ......................................................129

Figure 2. Randomized Controlled Trial flowchart ...................................................................145

Figure 3a. RCT control group – sources of patient information .............................................158

Figure 3b. RCT intervention group – sources of patient information ....................................158

Figure 4. LAEP study flowchart ..................................................................................................167

Figure 5. LAEP study symptoms at baseline ............................................................................170

Figure 6. LAEP study symptoms at three months ...................................................................170

Figure 7. LAEP study symptom changes over three months ................................................171

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Figures

Table 1. Diagnostic Categories......................................................................................................... 105

Table 2. Outcome measures – summary table................................................................................... 109

Table 3. FSC score range, mean, standard deviation, skewness, kurtosis and alpha coefficient .......... 127

Table 4. FSC Diagnostic Categories – mean recruitment age at all time points ................................ 130

Table 5. FSC Diagnostic Categories – gender distribution at all time points .................................... 130

Table 6. FSC Anxiety and Depression – baseline case distribution ................................................. 133

Table 7. FSC Diagnostic Categories – mean scores for key variables all available data .................... 136

Table 8. FSC Anxiety – case distribution in repeated measures sample ........................................... 138

Table 9. FSC Depression – case distribution in repeated measures sample ....................................... 138

Table 10. FSC Longitudinal Assessment – comparison of diagnostic categories repeated

measures sample ................................................................................................................ 139

Table 11. FSC Correlation Analysis – Baseline ............................................................................... 140

Table 12. Service satisfaction scale ..................................................................................................... 146

Table 13. Comparative data from the First Seizure Clinic new onset seizure/epilepsy sample

and the Multicenter Study of Early Epilepsy and Single Seizures [MESS] ....................... 149

Table 14. RCT study groups – mean recruitment age at each time point ............................................ 150

Table 15. RCT study groups – gender distribution at each time point .................................................151

Table 16. RCT study groups – social background measures ............................................................... 151

Table 17. RCT eight key variables – mean scores at all time points using all available data .............. 153

Table 18. RCT longitudinal change in eight key variables – repeated measures sample ..................... 154

Table 19. RCT Anxiety – case distribution for diagnostic groups – repeated mesaures sample ........... 156

Table 20. RCT Depression – case distribution for diagnostic groups – repeated mesaures sample ....... 156

Table 21. RCT service satisfaction scale – mean scores at both time points ......................................... 159

Table 22. RCT service satisfaction scale – longitudinal change with repeated measures sample ............ 159

Table 23. LAEP study groups ......................................................................................................... 167

Table 24. LAEP study – mean LAEP and HADS scores for longitudinal sample .......................173

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Tables

1

The First Seizure Clinic: Psychosocial characteristics of patients and the effect of an epilepsy support program

Chapter 1

Introduction

1.1 Overview

This thesis presents a psychosocial study located in the First Seizure Clinics of two

Australian public hospitals. The 12 month prospective study followed patients referred to

the clinics for investigation of a possible first seizure. Data were collected from participants

regardless of whether the medical investigations resulted in a seizure- related, or a non

seizure-related, diagnosis.

In addition, nested within the First Seizure Clinic study, was a randomized controlled trial.

The trial evaluated the effect of a patient support program on the psychosocial outcomes of

those patients with a seizure-related diagnosis.

An adjunct to the First Seizure Clinic study in response to the early evaluation of data was

an investigation of the Liverpool Adverse Events Profile (LAEP) (a measure of the adverse

effects of antiepileptic medication), in patients with a seizure-related diagnosis.

Chapter 1 provides a framework for the thesis, introducing the background and aims of the

research, followed by an overview of the research approach and an outline of the subsequent

chapters.

1.2 Background

Seizures are not infrequent events. They occur in approximately 10% of the general

population (Engel, 2002) and are due to abnormal electrochemical activity in the brain.

Seizures can vary from brief, uncontrolled body movements or disturbances of awareness,

through to convulsive episodes and unconsciousness (Shorvon, 2000). Seizures can also

cause injury or death (Hopkins & Shorvon, 1995). Where seizures recur an individual may

experience just a few seizures in a lifetime or many in one day. A person with a tendency

2


to have recurring seizures is said to have epilepsy (Commission on Epidemiology and

Prognosis, ILAE, 1993). The World Health Organization [WHO] (2005a) has declared

epilepsy to be one of the most common serious brain disorders worldwide. The cumulative

incidence of epilepsy (the risk of developing epilepsy in one’s lifetime) is between 3% and

5%, with the highest incidence rates in neonates, young children, and the elderly (Shorvon,

2000). Onset can occur at any age, and diagnosis can be challenging due to the variety

of seizure types and epilepsy syndromes. Seizures and non-seizure events can often be

confused, and in some studies the rate of misdiagnosis has been estimated to be as high

as 25% (Smith, Defalla, & Chadwick, 1999; Uldall, Alving, Hansen, Kibaek, & Buchholt,

2006). A diagnosis of epilepsy can trigger complex repercussions in a patient’s life, beyond

the physiological, to the psychological and social (Baker, 2002b).

Psychosocial comorbidity has been a persistent theme in relation to epilepsy, with historical

explanations frequently resting on superstition and stigma. With the application of

scientific investigation based on recognized practices, an association between epilepsy and

psychosocial comorbidity, including perceived stigma, continued to be observed (Barry

et al., 2008; Jacoby & Baker, 2008; Zeber, Copeland, Amuan, Cramer, & Pugh, 2007). In

1996 Jacoby, Baker, Steen, Potts and Chadwick noted that people with epilepsy are ‘…

generally considered to be at greater risk of psychopathology and more likely to be socially

dysfunctional…’ (Jacoby et al. 1996, p.148) than people without epilepsy. When considering

the research data it is important to bear in mind that some early studies may have

suffered from methodological shortcomings (Hermann & Whitman, 1992), leading to an

overestimation of the psychosocial problems related to epilepsy. For example, being a lower

prevalence episodic condition, for which it is often difficult to arrive at a clear cut point of

diagnosis or remission, there can be obstacles to recruiting a truly representative community

sample. This can lead to a reliance on data collected from specialist epilepsy clinics and

patient support groups where more serious and longstanding disorders will be represented

(Bell & Sander, 2001). The association between epilepsy and psychosocial comorbidity

remains poorly explained. To what degree do the psychosocial issues caused by the epilepsy

itself, arise as a result of treatment, come about as a response to the disorder, or occur

coincidentally? Current explanations are usually multifactorial; including neurobiological,

3


iatrogenic and psychosocial factors (Lambert & Robertson, 1999; Marsh & Rao, 2002;

Swinkels, Kuyk, van Dyck, & Spinhoven, 2005).

Examination of epilepsy management suggests that although epilepsy is not well understood,

medical treatments have been developed which are very successful in treating the condition

(Duncan, Sander, Sisodiya, & Walker, 2006; Kwan & Brodie, 2000; Leuthardt, 2008).

Nevertheless, patients with epilepsy can frequently fail to receive quality care (Department

of Health [DH], 2001a; Epilepsy Foundation, 2004). It appears this may be due to the

inadequacy of health service policies and resources associated with epilepsy services. In the

US, the first National Conference on Public Health and Epilepsy (Epilepsy Foundation,

1998) highlighted the need for ongoing research to identify how best to provide effective and

efficient care for people with epilepsy. Emphasis was placed on the particular importance

of research concerning first seizures and possible strategies to minimize the associated

psychosocial impact. Guidelines produced in an attempt to improve epilepsy care, have also

focussed especially on achieving the appropriate diagnosis and treatment at the time of new-

onset seizures (Stokes, Shaw, Juarez-Garcia, Camosso-Stefinovic, & Baker, 2004). Preventing

seizures may result in a reduction of negative psychosocial effects (Jacoby & Baker, 2008;

Morrell, 2002). However, further evidence is required (Epilepsy Foundation, 2004).

Guidelines for improved epilepsy care have also drawn attention to the need for service

development in the area of patient information and support (Scottish Intercollegiate

Guidelines Network [SIGN], 2003; Stokes et al., 2004). As epilepsy is a lower prevalence

condition, it has been suggested that a key to such development will be collaboration

between medical services and other stakeholders, such as epilepsy specific community

agencies (Chronic Disease Directors [CDD], 2003). It is in the area of patient information

and support particularly, that such agencies are seen to offer unique expertise. The current

study addresses issues of diagnosis and management in seizure patients through its

examination of psychosocial characteristics of First Seizure Clinic patients, and through its

evaluation of a patient support program for a subgroup of these patients.

4


1.3 Aims

This thesis has three broad aims:

to assess a range of psychosocial factors in patients who have experienced a possible 1.

first seizure and have been referred to a First Seizure Clinic, in order to establish the level

of psychosocial well-being at baseline, three months and twelve months. By including all

clinic patients regardless of the eventual diagnosis, the data will allow not only longitudinal

analysis, but also internal comparison of outcomes between patients with seizure-related,

and non seizure-related diagnoses.

to evaluate the effect of a patient support program on the psychosocial outcomes for First 2.

Seizure Clinic patients with a seizure-related diagnosis.

to carry out a post hoc analysis of the LAEP as a measure of possible adverse 3.

antiepileptic drug (AED) effects in patients with a seizure-related diagnosis.

1.4 Research approach

Baseline psychosocial measures in people with epilepsy have rarely been collected and

by recruiting patients referred to a First Seizure Clinic for investigation of a possible first

seizure, psychosocial measures can be collected at a very early stage of the diagnostic

process. These early measures can provide a baseline against which to assess the ongoing

impact of seizures, epilepsy, and treatment, over time.

By recruiting all patients in the study from just two clinics which have strong connections

and common styles, all patients in the study are known to be managed under the same

general protocol in regard to diagnostic definitions, the use of investigative tests, the

choice of medications, and the provision of patient information. Furthermore, because

approximately 30% of the patients referred to the First Seizure Clinic for assessment

ultimately receive a non-seizure diagnosis, the setting generates a useful subgroup of patients

who have shared a clinical pathway similar to the seizure patients. They are subject to the

same diagnostic investigations and stressors and thereby provide a unique comparative

5


sample against which to further assess, and hence more clearly define, the psychosocial

outcomes for the seizure patients.

In addition the overall cohort results provide a dataset which reflects the outcomes of

patients managed in a First Seizure Clinic setting, and thus can contribute to evaluation of

this innovative framework of care. Based in an outpatient setting the study has few exclusion

criteria applied to participants, thereby facilitating generalization to other similar settings.

The use of measures in common with larger international studies of new-onset seizures

allows for cross-study comparisons.

A prospective study in this setting also provides a suitable framework in which to test an

early intervention, designed to reduce negative psychosocial outcomes for newly diagnosed

seizure patients. The study utilizes a pragmatic randomized controlled trial to evaluate

a unique support program established by the Epilepsy Foundation of Victoria, Australia

(www.epinet.org.au). Systematic trials of psychosocial support programs for people who

experience seizures are rare. This research provides a model for such a study.

1.5 Outline of thesis

This thesis is constructed in eleven chapters. The first chapter has introduced the

background, aims, and research approach. The following four chapters present a

review of the literature framing the current thesis. Chapter 2 provides an overview of

seizures and epilepsy, including definitions, epidemiology and management. Chapter 3

considers psychosocial sequelae of a seizure diagnosis, especially depression, anxiety, and

stigma. Chapter 4 describes the frameworks of epilepsy care, examining options for the

improvement of management, while chapter 5 focusses on the question of information,

education, and support for seizure patients. Chapter 6 provides a link between the

theoretical and practical aspects of the thesis and chapter 7 presents the methodology

underpinning the execution of the research. The study protocols are described, as are the

procedures used to recruit participants and the measures used to collect data.

6


Results are reported in chapters 8 to 10. Chapter 8 begins with a discussion of the data

management and a preliminary analysis of the variables of interest in the chapter. Then

follows a description of the cohort at baseline, and a comparison of the characteristics of

those participants, based on their allocation to one of the four broad categories according to

diagnosis. Long term outcomes for the cohort are also assessed and compared by diagnostic

category. Chapter 9 presents data from the randomized controlled trial (RCT) nested within

this study. The RCT includes only patients with a diagnosis of a single seizure or epilepsy

and investigates the effect of a patient support program for newly diagnosed seizure or

epilepsy patients within a First Seizure Clinic. Chapter 10 concludes the results with a post

hoc analysis of data specifically related to the LAEP. This line of investigation arose from

consideration of the results reported in chapter 8, which indicated some possible anomalies

in the functioning of the LAEP scale.

Each results chapter includes a section of chapter-specific discussion in conjunction with

the results. However chapter 11 draws all themes together for a general discussion relating

the findings of the study to the care of people with seizures. Additionally, limitations of the

research are discussed along with suggestions for future investigations.

7


Chapter 2

Seizures and Epilepsy

2.1 Introduction

Chapter 2 is the first of four chapters which review the literature framing this thesis. The

chapter provides an overview of seizures and epilepsy, beginning with an explanation of the

various definitions and classifications which exist (2.2–2.3). Thereafter, follows a discussion

of causes (2.4) and a summary of the epidemiological data (2.5). The issues of comorbidity

are then introduced (2.6). The investigative process, including the difficulties of reaching a

clear diagnosis, is outlined (2.7), and approaches to treatment methods are discussed (2.8).

The chapter concludes with a summary, and a preview of chapter 3 (2.9).

2.2 Definitions

2.2.1 Seizure

The word seizure derives from the Greek word ‘epilambanein’ meaning to be seized, a

reflection of ancient beliefs as to the supernatural causes of such events (WHO, 2004b;

Reynolds, 2005). In modern language the word seizure may refer to a number of physical

and psychological events which resemble seizures. Therefore, in the discussion of epilepsy,

the term epileptic seizures may be used for clarity (Fisher, van Emde Boas, et al., 2005).

A recent definition of an epileptic seizure is ‘…a transient occurrence of signs and /or

symptoms due to abnormal excessive or synchronous neuronal activity in the brain’ (Fisher,

van Emde Boas, et al., 2005, p. 470). Seizures have many possible manifestations depending

on the location of onset in the brain, the pattern of seizure propagation, brain maturity,

the sleep/wake cycle, medications, and other factors. They can affect motor, sensory and

autonomic function, with or without alterations of consciousness, and they may or may not

be apparent to an observer (Fisher, van Emde Boas, et al., 2005).

8


2.2.2 Epilepsy

Epilepsy occurs in both men and women of all ages, and has no geographical, racial, or

social boundaries (Duncan et al., 2006; WHO, 2004b). It is a brain disorder characterized

predominantly by epileptic seizures (recurrent and unpredictable interruptions of normal

brain function). Epilepsy is not just one condition, but rather it is a diverse family of

disorders which have in common an abnormally increased predisposition to seizures (Fisher,

van Emde Boas, et al., 2005). The brain dysfunction which underlies the seizures can have

many different causes. Consequently, UK clinical guidelines suggest that epilepsy should

be viewed as a symptom of an underlying neurological disorder and not as a single disease

entity (Stokes et al., 2004). To communicate the diversity encompassed by this disorder,

the term ‘the epilepsies’ is sometimes used (Fisher, van Emde Boas, et al., 2005). A formal

definition of epilepsy has proved challenging, even for the International League Against

Epilepsy (ILAE), and it continues to evolve amidst debate (Duncan et al., 2006; Engel,

2006). The operational definition still currently accepted describes epilepsy as a condition

characterized by recurrent (two or more) epileptic seizures, unprovoked by any immediate

cause, occurring more than 24 hours apart (Commission on Epidemiology and Prognosis,

ILAE, 1993; Engel, 2006). A more recent conceptual definition describes epilepsy as ‘…a

disorder of the brain characterized by an enduring predisposition to generate epileptic

seizures and by the neurobiological, cognitive, psychological and social consequences of this

condition’ (Fisher, van Emde Boas, et al., 2005, p. 470). In practical terms this means that

although at least one seizure is required to establish the presence of epilepsy, if enduring

disturbance of the brain capable of giving rise to other seizures is identified, the diagnosis

of epilepsy would not necessarily require two seizures. It is also interesting to note that this

definition does not require the seizure to be unprovoked, as in earlier definitions; instead the

focus is turning to the individual brain, and the identification of any intrinsic epileptogenic

abnormality of the brain itself which is present between seizures, independent of any acute

insult or condition (Fisher, van Emde Boas, et al., 2005).

9


2.3 Classification

2.3.1 Seizures

Seizures can take many forms, thereby complicating the task of definition and

categorization. There can be overlap between categories, and debate is ongoing as attempts

are made to redefine the current formal classifications (Engel, 2006; Loddenkemper et al.,

2005). However, the 1981 classification of epileptic seizure types produced by the ILAE

currently remains the generally accepted basis of seizure classification, widely adopted in

both clinical and research practice (Commission on Classification and Terminology of the

ILAE, 1981; Engel, 2006). This classification is based on clinical and electrographic features

of the seizure with two main groups described: generalized seizures and partial (also known

as focal) seizures (Engel, 2006). Generalized seizures appear to begin simultaneously in

both hemispheres and are sometimes described as either convulsive or non-convulsive.

Partial (focal) seizures begin within a part of one hemisphere. When consciousness is

maintained throughout such a seizure it is described as a simple partial seizure (SPS). If

consciousness is impaired at some point during the seizure, the term complex partial seizure

(CPS) may be applied. If either partial seizure type evolves to become generalized, the

seizure is said to be secondarily generalized. The clinical features of a partial (focal) seizure

will reflect their location within the brain (Duncan et al., 2006; Engel, 2006).

2.3.2 Epilepsy Syndromes

Seizures are further classified into epilepsy syndromes, which have been defined as a

‘… complex of signs and symptoms that define a unique epileptic condition. This must

involve more than just the seizure type’ (Engel, 2001, p. 796). In addition to seizure type,

syndromic classification may provide information about aetiology, chronicity and prognosis.

As knowledge of pathophysiologic mechanisms grows, work to develop a more detailed

and informative classification is ongoing. However, the most widely used classification

of epilepsy syndromes remains that devised by the Commission on Classification and

Terminology of the ILAE (1989) (Engel, 2006). The categories differentiate primarily

between syndromes which are either generalized or location-related and, either symptomatic

10


(due to one or more identifiable structural lesions of the brain) or idiopathic (no underlying

cause other than a possible hereditary predisposition) (Sander, 2005; Stokes et al., 2004).

Recent guidelines for the diagnosis and management of epilepsy in adults emphasize the

value of syndrome identification, noting that the differentiation of idiopathic generalized

epilepsies and focal (location-related) epilepsies can guide not only treatment choices, but

also investigations, prognosis, and counselling (SIGN, 2003). Therefore, a diagnosis of

epilepsy is usually considered to require not only a determination of seizure type but also of

syndrome and underlying cause where possible (SIGN, 2003; Stokes et al., 2004).

2.4 Causes of seizures and epilepsy

The probability that a person will have a seizure at some time in life is around 10% (Engel,

2002; Epilepsy Foundation, 2004; Hauser, Annegers, & Rocca, 1996; WHO, 2009). In about

50% of these people (Hauser, Annegers, & Kurland, 1993), the seizures occur as a reaction

to a transient insult to the central nervous system (CNS) and they are generally referred to

as provoked, or acute, symptomatic seizures (Hauser, Annegers, & Kurland, 1991). They

include febrile seizures (seizures occurring in childhood associated with a febrile illness not

caused by a CNS infection). They also include acute provoked seizures occurring ‘…in close

temporal association with acute systemic metabolic, or toxic insult or in association with

an acute CNS insult (infection, stroke, cranial trauma, intracerebral haemorrhage, or acute

alcohol intoxication or withdrawal)’ (Commission on Epidemiology and Prognosis, ILAE,

1993, p. 594). Acute symptomatic seizures are often isolated events in association with acute

conditions. However, they may be recurrent when the acute condition recurs, as in alcohol

withdrawal (Hopkins & Shorvon, 1995). Because they are provoked, acute symptomatic

seizures do not generally attract a diagnosis of epilepsy. Nevertheless, research has shown

that individuals who experience an acute symptomatic seizure are more likely to have a

positive family history for epilepsy (Hopkins, 1995a). This information supports the concept

of an inherent ‘seizure threshold’ in each person (Hopkins & Shorvon, 1995) and suggests

that acute symptomatic seizures are not just simple, predictable cause and effect events, but

the result of the interaction between the provoking factor and the individual brain (2.2).

11


In approximately 4% to 6% of the population seizures are not an immediate or acute

response to a CNS insult. (Forsgren, Beghi, Oun, & Sillanpaa, 2005; Hauser et al., 1993;

Hauser et al., 1996) and are therefore sometimes referred to as unprovoked. In the first two

years following an initial unprovoked seizure, there is a recurrence rate of approximately

50% (Berg & Shinnar, 1991). Where such seizures do recur, the diagnosis will usually be

epilepsy. Unprovoked seizures may be classified as either idiopathic seizures or remote

symptomatic seizures. The term symptomatic, applies where an apparent underlying brain

abnormality is identified as the cause. This may have occurred during the development of

the brain or as the result of a neurological insult to the brain during life, including infection,

injuries, surgical intervention, or deterioration of the brain for any reason (Sander, 2004).

Like acute symptomatic seizures, these remote symptomatic seizures are symptomatic of

abnormalities, but unlike acute symptomatic seizures, there is a time lapse between the brain

insult and the seizure. This can be anything from at least one week to many years. Hence the

use of the description remote symptomatic seizures (Hauser et al., 1991). It is interesting to

note that even where the cause of the epilepsy is an acquired cerebral abnormality, epilepsy

is a more common sequel in individuals who have a positive family history of epilepsy

(Shorvon, 1995). Such findings again underline the individuality of each brain in its response

to insult and its predisposition to epilepsy.

The term idiopathic may be applied when the cause of a seizure is not apparent, and

historically it has often been taken to mean ‘no known cause’. However, this use of the term

is now discouraged as it appears that many of the so called idiopathic (mostly generalized)

epilepsy syndromes have strong genetic basis (Commission on Epidemiology and Prognosis,

ILAE, 1993; Sander, 2003; Shorvon, 1995a). In fact, as noted above, family history may be

a factor in most types of epilepsy, even those with apparent causative factors. Genetic and

acquired factors are presumed to be interacting (Duncan et al., 2006; Shorvon, 1995a).

It is important to note that there are a number of regular lifestyle factors which are

commonly recognized as seizure precipitants in some people. These include sleep

deprivation, female hormonal variations, stress, certain visual stimulation, and in rare

cases reading, sounds, startle stimuli, and particular thought processes (Hopkins, 1995a).

12


However, because these precipitants are commonly encountered in every-day life (and

do not represent an acute CNS insult such as that which triggers an acute symptomatic

seizure – discussed above) seizures triggered by such precipitants are usually considered as

unprovoked (Hauser et al., 1991). The presence of the precipitant has only served to indicate

a pre-existing susceptibility to seizures within that individual and the precipitant is therefore

not considered to be the cause of the seizure.

2.5 Epidemiology

In assessing the epidemiological data associated with epilepsy it is necessary to take into

account the difficulties encountered in the diagnosis and classification of epileptic seizures

and syndromes (2.3). Variations in the diagnostic criteria which are applied, or the methods

of classification used, will affect the data (Kotsopoulos, van Merode, Kessels, de Krom,

& Knottnerus, 2002; Sander, 2003). The methodology of case-ascertainment also needs

to be evaluated in relation to any data collected. Data taken from clinical records may be

comprehensive and accurate but could also reflect selection bias, whereas data taken from

a community survey may contain a representative population sample but could suffer

from inaccuracy or incomplete disclosure by participants (Bell & Sander, 2001; Hopkins &

Shorvon, 1995).

Australian epilepsy data are very limited and estimates for the burden of disease are usually

based on international data. In Victoria the resulting state estimates are classified as only

‘fair’ (http://www.dhs.vic.gov.au/health/healthstatus/bod/accuracy.htm). Large studies

such as the Tasmanian Epilepsy Register (D’Souza et al. 2007) or the Sydney Epilepsy

Incidence Study to Measure Illness Consequences (http://www.thegeorgeinstitute.org/iih/

research/neurological-&-mental-health/studies-&-trials/sydney-epilepsy-incidence-study-

to-measure-illness-consequences.cfm), which have the potential to systematically gather

Australian epidemiological data for epilepsy, are recent innovations which need more time

to mature. A lack of quality local data affects health policy decisions, and this is further

discussed in chapter 4.

13


2.5.1 Prevalence

Epilepsy, once diagnosed, is considered to be active where an individual has had at least

one epileptic seizure in the previous five years, regardless of antiepileptic drug (AED)

treatment. People with no seizures for five years but still on treatment are classified as active

cases in some studies (Hauser et al., 1991), although according to ILAE definitions, they

would be classified as epilepsy in remission with treatment (Commission on Epidemiology

and Prognosis, ILAE, 1993; Forsgren et al., 2005). Hence the impact of such variations

must be considered when comparing figures. The prevalence (proportion of individuals

within a population who have the condition at a particular point of time) of active epilepsy,

is considered to range between 4 and 10 per 1000 people per year (Forsgren et al., 2005;

Hauser et al., 1991; ILAE, 1997; Sander, 2003).

Using prevalence data the WHO estimates that approximately 50 million people worldwide

are living with the condition at any one time, and declares epilepsy to be one of the most

common serious brain disorders worldwide (WHO, 2005b). It should be noted that

prevalence represents complex interactions between many factors including the incidence

of the condition (the rate at which new cases occur), death, and remission. Consequently it

has been described as a reflection of survivorship and severity or chronicity of illness, as

much as it is of frequency. It offers little information regarding aetiology or prognosis and its

primary value may be for health service planning (Hauser, 1997).

2.5.2 Incidence

Incidence is the rate at which new cases occur in a population. Studies of incidence are more

time consuming and costly than prevalence studies. However, incidence cohorts are more

representative of the range of epilepsy cases and, being identified at an earlier point in the

course of the condition, reliable information regarding antecedents may be gathered (Hauser

& Annegers, 1993). The overall incidence is usually taken to be approximately 50 per

100,000/year in industrialized countries (Duncan et al., 2006; Forsgren et al., 2005; Zarrelli,

Beghi, Rocca, & Hauser, 1999). Socioeconomic deprivation has been associated with a

higher risk in several studies (Heaney et al., 2002; Hesdorffer et al., 2005). In developing

14


countries the estimated incidence is 100 per 100,000/year (Sander, 2003). It is suggested that

this higher figure may be due to the higher risk of conditions which lead to permanent brain

damage such as neurocysticercosis, meningitis, malaria, pre and perinatal complications and

malnutrition (Reynolds, 2005).

The age specific incidence of epilepsy shows a peak of onset in childhood, which declines in

young people and rises again in the elderly (Bell & Sander, 2001). However some changes to

these incidence rates have been observed over the last 30 years with a fall in the childhood

rates and a simultaneous increase in rates for the elderly (Sander, 2003). The underlying

causes of epilepsy also vary with age. In childhood, idiopathic epilepsy is most common,

while in adults symptomatic epilepsy becomes more common due to acquired causes such as

tumours, trauma, infection, and cerebrovascular disease (Hauser et al., 1993). In developing

countries however, age specific incidence rates differ from those quoted above, with a peak

incidence in young adults and no identified dramatic increase in the elderly. This suggests

that risks for epilepsy are different in these populations (Hauser, 1997).

The cumulative incidence of epilepsy (the risk of developing epilepsy in one’s lifetime), has

been reported to be approximately 3% to 5% (Shorvon, 2000). There appears to be a slightly

higher incidence of epilepsy in males to females by 1 to 5/100,000 people/year (Mathern,

2006). Suggested causes include higher rates of traumatic brain injury in males but reasons

are not clear (Hauser, 1997; Hopkins & Shorvon, 1995).

One point to consider when assessing global data is that despite the fact that incidence

rates in developing countries appear to be at least twice those of countries which are more

developed, prevalence rates are similar in both the developed and developing world. The

question arises as to whether more people in the former are dying from epilepsy or its

underlying cause, or going into spontaneous remission. Scott, Lahtoo and Sander (2001)

note that death is considered to be the most likely reason but lack of comprehensive

mortality data means the question cannot be answered at this point.

15


2.5.3 Mortality

Methodological difficulties arise in epilepsy mortality studies, as they do in any epilepsy

epidemiological assessment. In addition to variations which can occur between studies

regarding the definition and classification of the epilepsy diagnoses, variations also occur

in the classification of deaths, and the nature of the populations considered (Bharucha,

2005; Gaitatzis & Sander, 2004; Schraeder, Delin, McClelland, & So, 2006). The measure of

epilepsy-related mortality recommended by the ILAE (1997) is the standard mortality rate

(SMR – the ratio of the number of deaths observed in a population with epilepsy to that

based on the age- and sex-specific mortality rates in a reference population). Although there

is considerable variation in mortality risk ratios between studies (Shackleton, Westendorp,

Kasteleijn-Nolst Trenite, de Craen, & Vandenbrouke, 2002), many authors agree that the

overall SMR is 2–3 times that of the general population (Bharucha, 2005; Gaitatzis &

Sander, 2004; Tomson, Beghi, Sundqvist, & Johannessen, 2004). In using these figures

however, it is necessary to acknowledge that epilepsy mortality data derive mostly from

western industrialized countries and are unlikely to accurately represent global conditions

(Cooper, Osotimehin, Kaufman, & Forrester, 1998; Sander, 2003).

Certain risk factors have been associated with higher death rates. Idiopathic epilepsy has

the lowest long-term mortality. In symptomatic epilepsy the SMR is significantly higher

especially where there is an accompanying neurological deficit, in which case the SMR tends

to follow the mortality of the underlying cause of the epilepsy (Gaitatzis & Sander, 2004).

The causes of death in people with epilepsy can be classified into three categories: deaths

unrelated to epilepsy, deaths occurring as a result of the cause of the epilepsy, and death

caused directly by epilepsy. It is the second category which predominates in newly diagnosed

epilepsy, and longer term follow up suggests that mortality of epilepsy is higher in the early

years post diagnosis with a decrease over time (Gaitatzis & Sander, 2004; Tomson et al.,

2004). Higher SMRs occur in younger people (due to the low expected mortality in that age

group) and increased risks have been associated with certain seizure types and higher seizure

frequency (Gaitatzis & Sander, 2004).

16


Deaths attributed directly to epilepsy itself include Sudden Unexpected Death in Epilepsy

(SUDEP), treatment-related deaths, and suicide, although the contributory factors and the

level of risk in suicide are subject to debate (Gaitatzis & Sander, 2004; Nilsson, Ahlbom,

Farahmand, Asberg, & Tomson, 2002). Also included are seizure-related deaths, such as

those occurring in status epilepticus (SE) and seizure-related accidents such as drowning

and burns (Gaitatzis & Sander, 2004; Tomson et al., 2004). SUDEP is the most frequent

cause of epilepsy-related deaths with an estimate of 500 per year in the UK (Hanna et al.,

2002). However, this cause of death has only recently begun to be generally recognized as

a specific phenomenon, and its definition has been slow (Shraeder et al., 2006). Although

the cause of SUDEP is unknown and deaths are unpredictable, people at higher risk tend to

suffer from more severe epilepsy, with frequent seizures and requiring many AEDs (Tellez-

Zenteno & Wiebe, 2005). Those who die from SUDEP are often young or middle aged and

are frequently found dead in bed (Nashef, 2005). Where the deaths of people with epilepsy

are known to be seizure-related, it has been suggested that improved seizure control could

reduce mortality (Tomson et al., 2004). The UK audit into epilepsy-related deaths concluded

that optimizing patient care could prevent a range of epilepsy-related deaths, including

SUDEP (Hanna et al., 2002).

2.6 Impact of seizures and epilepsy

2.6.1 Comorbidity

There is an increasing emphasis on the recognition of comorbidities associated with

epilepsy, an approach which could lead to refinements in the treatment of epilepsy as well

as improved management of coexisting conditions (Bazil, 2004; Vazquez & Devinsky,

2003). Although consideration of comorbidity has been increasingly integrated into

epilepsy research (Pulsipher, Seidenberg, Jones, & Hermann, 2006), given the incomplete

understanding of the aetiological mechanisms associated with epilepsy it is perhaps

not surprising that study of comorbidity is also complicated by the complex and poorly

defined interrelationship of neurobiological, iatrogenic and psychosocial factors which

attach to epilepsy (Hermann, Whitman & Anton, 1992). Despite increased identification

and description of coexisting conditions, understanding the direction of cause and effect

17


remains limited (Gaitatzis, Carroll, Majeed, & Sander, 2004). Key areas of concern include

cognitive function, psychiatric, and psychological disorders (Bora & Haut, 2003; Motamedi

& Meador, 2003).

The increased risk of cognitive deficits in epilepsy can be due to a range of factors (Hirsch,

Schmitz, & Carreño, 2003) thereby complicating assessment. Contributing factors may

be a brain disorder underlying the epilepsy, the seizures themselves, the adverse effects of

treatment, or a combination of all three (Aldenkamp, De Krom, & Reijs, 2003). In children

with epilepsy, investigations have documented behavioural symptoms of inattention and

hyperactivity, along with an increased prevalence of Attention Deficit Hyperactivity Disorder

(ADHD) (Dunn, Austin, Harezlak, & Ambrosius, 2003). It is of interest that research has

also found some of these symptoms were present pre-diagnosis (Dunn et al., 2003).

The psychiatric and psychological conditions associated with epilepsy are diverse and include

psychosis, mood disorders and anxiety disorders (Boro & Haut, 2003). These conditions,

similarly to cognitive dysfunction, may result from shared neuropathologic foundations

with epilepsy, occur as a result of the condition, or appear as an outcome of treatment.

Depression is the most common comorbid condition in epilepsy (Bazil, 2004) and this

is a highly significant issue, given that research suggests depression is a key predictor of

quality of life for those living with epilepsy (Gilliam, Hecimovic, & Sheline, 2003; Johnson,

Jones, Seidenberg, & Hermann, 2004). The relationship between depression and epilepsy

is complex and poorly understood with recent research indicating that, like symptoms of

ADHD, depression may be a common antecedent to epilepsy in many patients (Hesdorffer,

Hauser, Annegers, & Cascino, 2000). Significant perceived impairment of Quality of Life

(QOL) for patients has been documented, highlighting areas of concern such as mood, self

esteem, employment, social interaction, family life and stigma (Baker, Jacoby, & Chadwick,

1996). Positive determinants of QOL have been found to be good control of seizures (Leidy,

1999), and low rates of depression (Berto, 2002). Further discussion of psychiatric and

psychosocial comorbidity, especially depression and anxiety, will follow in chapter 3.

Injuries related to epilepsy have received only modest research attention, with variations in

study samples and techniques contributing to a lack of consistency in results (Cornaggia,

18


Beghi, Moltrasio, & Beghi, 2006; Tomson et al., 2004). Overall, studies indicate a slightly

increased risk of injury, although this appears most frequently to be minor injury (Wirrell,

2006). Certain factors such as seizure frequency and type do increase risk, especially in

situations such as submersion (Beghi, Cornaggia, & RESt-1 Group, 2002; Buck, Jacoby,

Baker, & Chadwick, 1997; Lawn, Bamlet, Radhakrishnan, O’Brien, & So, 2004; Tomson

et al., 2004). Some studies suggest that the more serious injuries such as severe burns,

head injuries and motor vehicle accidents may have been overestimated (Beghi et al., 2002;

Lawn et al., 2004) but others such as a study by Ansari, Brown and Carson (2008) showing

a strong association between epilepsy and burns in hospital admissions continue to raise

questions.

As is to be expected, epilepsy will often occur in conjunction with a number of conditions

which are risk factors for seizures. These include head injuries, Alzheimer’s disease, stroke,

cerebral palsy, developmental disabilities, and brain tumours (Bazil, 2003; Levisohn, 2001).

In addition, headache and sleep disturbance are known to have an interactive relationship

with epilepsy. Headaches can occur before and after seizures, and patients with epilepsy

are more likely to suffer from migraine (Bigal, Lipton, Cohen, & Silberstein, 2003). Sleep

deprivation can increase the frequency of seizures, but also, epilepsy and its treatment can

alter sleep patterns. Research suggests that a range of other general medical conditions may

occur more frequently in people with epilepsy (Gaitatzis et al., 2004).

2.6.1.1 The effect of AED treatment

The treatment of epilepsy can of itself induce comorbid symptoms. The primary therapy

for the condition is antiepileptic drugs (Kwan & Brodie, 2000) and the use of AEDs is

frequently associated with adverse effects, such as idiosyncratic reactions, dose-related

neurocognitive effects, and complications of long-term use (Mattson, 1995; Zaccara,

Cincotta, Borgheresi, & Balestrieri, 2004). In the reproductive system, the effects of

AEDs are wide ranging including sexual dysfunction, fertility problems, polycystic ovary

syndrome, contraception failure, and foetal abnormality (Boro & Haut, 2003).

Some AED adverse effects are relatively conspicuous, facilitating objective assessment by

the treating doctor (for example, weight gain or loss, skin rashes, or gum disease). However,

19


many adverse effects are difficult to observe and rely heavily on subjective patient reporting.

These include tiredness, memory difficulties, mood disturbance, concentration problems, or

decreased libido. It is rare to obtain objective measures of these treatment-related symptoms,

which are essential for both research and clinical purposes. Spontaneous patient reporting

has been used in some studies; however, it would appear that unless patients are asked

directly about specific symptoms, adverse effects can be overlooked, as patients may not

realize that they could be connected to AED treatment (Deckers et al., 1997). Nevertheless,

a proactive approach also increases the risk of over-reporting.

The clinical monitoring of AEDs has traditionally focused on the measurement of drug

serum levels and maintenance of these levels within a prescribed therapeutic range.

However, great variation exists between patients in their sensitivity to AEDs, and this is not

well predicted in individuals by an assessment of serum levels. Low doses can be effective in

some patients, and high doses may be necessary, tolerated, and apparently safe in others (2.8.3).

Therefore a clinical assessment of the seizures and the presence of adverse effects are now

advocated as the primary method of monitoring AED treatment (Brodie & Dichter, 1997).

2.6.2 Burden of disease in epilepsy

To summarize and compare the overall effect of one health condition against others

presents an extraordinary challenge, especially if geographical and cultural variations are

to be taken in account. To this end the Harvard School of Public Health collaborated with

The World Bank and WHO in developing a method to quantify what is now termed, the

global burden of disease (GBD) (Leonardi & Uston, 2002). The associated measure which

has been designed to calculate the percentage of GBD for individual health conditions is

the disability adjusted year (DALY). It is a single indicator which estimates life lost from

premature death plus years of life lived with disabilities including social, physical and mental

disability (Mathers, 2001). The GBD assessment has become a high profile aspect of public

health planning and policy development. Although not without its critics, it has nevertheless

become a powerful influence on health evaluation and project funding (Cooper et al., 1998).

For epilepsy, the global GBD is estimated at 0.5% (Leonardi & Uston, 2002; WHO, 2006).

This can be compared with multiple sclerosis at 0.1%, or breast cancer at 0.4%, or diabetes

at 1.3% (WHO, 2001).

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2.7 Diagnosis

2.7.1 Overview

There are differential diagnoses when a patient presents with a possible seizure (Smith,

2001). Because the attack has occurred prior to presentation, the distinction is based

primarily on post-event clinical assessment, the patient’s description of the event and,

where possible, the account of a witness (Duncan et al., 2006; Hopkins, 1995b). In an era

when medical practice commonly includes pathological and technical investigation in the

diagnostic process, patients are often surprised that a test result is not always necessary to

confirm the diagnosis of a seizure or epilespy (Hopkins, 1995b). This does not imply that the

diagnosis is always self-evident (van Donselaar, Stroink, & Arts, 2006). Incorrect epilepsy

diagnoses by non-specialists can be as high as 25%, with syncope and psychogenic attacks

commonly diagnosed erroneously as epilepsy (Josephson, Rahey, & Sadler, 2007; Krumholz,

1999; Leach et al., 2005; Scheepers et al., 1998; Smith et al., 1999; Uldall et al., 2006).

Misdiagnosis can be costly to the individual physically, emotionally, and socially (Josephson

et al., 2007). It also adds unnecessarily to the community’s financial burden of health care

costs (Juarez-Garcia, Stokes, Shaw, Camosso-Stefinovic, & Baker, 2006).

2.7.2 Differential diagnoses

The symptoms which cause a patient to seek help usually involve some disturbance of

the conscious state and there are a number of differential diagnoses which need to be

considered, including cardiac, psychological, psychiatric and metabolic disturbance (Duncan

et al., 2006; Smith, 2001). For children, practice guidelines (Stokes et al., 2004) give 36

differential diagnoses of epileptic seizures, and the list could be increased (Ferrie, 2006).

Symptoms usually considered suggestive of a seizure include déjà vu, certain tastes or

smells, a rising abdominal sensation, tongue biting, incontinence and post ictal confusion

(when describing epilepsy the term ictal refers to the actual moment of seizure occurrence),

but all occur with other conditions (Dunn, Breen, Davenport, & Gray, 2005). Because some

clinical features are common to different types of attack, it is recommended that a diagnosis

be based on the range of clinical features, not on single features alone (SIGN, 2003).

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2.7.2.1 Syncope

Syncope, (fainting) is common, and a frequent reason for transient loss of consciousness

(Day, Cook, Funkenstein, & Goldman, 1982; Martikainen et al., 2003). Hindley, Ali and

Robson (2006) found syncope to be the most common cause of a non-epileptic event

in children referred to a ‘fits, faints and funny turns’ clinic. When syncope occurs, the

impairment of consciousness and preceding symptoms result from a transient failure in

global cerebral perfusion (which differs from transient focal perfusion failure which occurs

with transient ischaemic attacks in cerebrovascular disease) (Hopkins, 1995b). Syncope has

numerous causes, not all understood. For example, sudden postural change may lead to

syncope as may a strong emotional factor such as fear or pain. Medication can interfere with

blood pressure stability, and cardiac or CNS abnormalities may also lead to syncopal events

(Smith, 2001). However, whatever the trigger, the subsequent sudden loss of blood pressure

results in inadequate cerebral blood supply. Syncopal attacks may be so abrupt that the

patient cannot recall the event, however in many cases distinctive symptoms are associated

with falling cerebral perfusion such as a sense of unease, nausea, sweating, tinnitus, a sense

that the voices of bystanders are far away, and a greying out of vision. If the patient loses

consciousness and falls, circulation usually improves and consciousness without significant

confusion returns (Hopkins, 1995b). Tilt table testing may help to diagnose syncope

(Passman et al., 2003). Nevertheless, a thorough history identifying possible contributing

factors and similar episodes or near miss events is indispensable in differentiating syncope

and seizures (Hadjikoutis, O’Callaghan, & Smith, 2004; Lempert, 1996).

2.7.2.2 Reflex anoxic seizures

The cerebral hypoperfusion of syncope may trigger jerks or muscle spasms in the patient

leading to witness accounts that the patient has experienced a seizure. In fact this is not the

case and the phenomenon has been documented in patients where syncope was induced for

research purposes (Lempert, Bauer & Schmidt, 1994). As with syncope, a careful history

of the circumstances of the event, combined with the patient’s perception of the preceding

moments, is considered the key to distinguishing between an epileptic seizure and the

anoxic response to syncope (Hopkins, 1995b; Smith, 2001).

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2.7.2.3 Panic attacks

The symptoms of a panic attack can include the onset of sudden fear, dizziness, paraesthesia,

and a sense of unreality. In addition, hyperventilation can induce focal neurological

symptoms such as blurred vision or lateralized facial and limb tingling (Smith, 2001). Such

symptoms are not dissimilar to those of a complex partial seizure, making a differential

diagnosis difficult for the inexperienced. However, the disturbance of consciousness that

occurs can be a key to differentiation (Hopkins, 1995b).

2.7.2.4 Non-epileptic seizures

Non-epileptic seizures, also referred to as psychogenic seizures (Mari et al., 2006),

pseudoseizures (Hopkins, 1995b) or dissociative non-epileptic attack disorder (NEAD)

(Smith, 2001), can be difficult to diagnose although a range of diagnostic indicators have

been identified. For example, these events are often precipitated by stressful situations,

seldom occur from sleep, occur in the presence of others, and may occur in response to

suggestion (Hopkins, 1995b). Women present more frequently than men and a history of

childhood physical and/or sexual abuse is common (Smith, 2001). The events may include

vigorous motor activity, or the patient may collapse limply. Awareness and responsiveness

may be retained, there is no post ictal confusion and no elevation of the serum prolactin

which can be elevated following epileptic seizures (Fenwick, 1995). During such seizures

incontinence or injury can occur and these events can coexist with epilepsy. As with other

non-seizure diagnoses the history may give clues to the diagnosis (Carreño, 2008).

2.7.2.5 Other possible diagnoses

In addition to the specific diagnoses discussed above, there is a range of additional possible

alternative diagnoses to consider. These include migraine, transient ischaemic attacks,

cardiac related events, breath-holding attacks, night terrors and nightmares, paroxysmal

movement disorders, narcolepsy-cataplexy syndromes and hypoglycaemia (Hindley et al.,

2006; Pohlmann-Eden, Beghi, Camfield, & Camfield, 2006; SIGN, 2003).

23


2.7.2.6 Medically unexplained symptoms

Epilepsy is episodic and, despite careful assessment of the patient, the diagnosis is not

always immediately apparent. Time may be required in order for the underlying condition

to declare its true nature (Smith, 2001). Even so, in some cases a diagnosis cannot be made

and symptoms remain unexplained. Hindley et al. (2006) recorded 14% unclassified cases in

their series of 380 children referred to the ‘fits, faints and funny turns’ clinic. Breen, Dunn,

Davenport, and Gray (2005) recorded 15% unclassified cases in their series of 232 patients

referred to a first seizure clinic. Patients with unexplained symptoms are not confined

specifically to seizure clinics but are found in a variety of treatment settings (Escobar et al.,

2007) where the cause and implications of their symptoms demands careful consideration.

Unexplained symptoms may be an expression of distress (sometimes referred to as

somatization) (Herrman & Chopra, 2009). For example, Carson et al. (2000) reported that

although one third of new referrals to a general neurology clinic had symptoms that were

poorly explained by identifiable organic disease, physical symptoms and pain were more

common in these patients. Depression and anxiety was also more common in these patients,

a finding consistent with other studies (Henningsen, Zimmermann, & Sattel, 2003). Many

patients with unexplained symptoms are discharged, but others continue to attend and are

often referred on to another specialty, becoming frequent attenders (Reid, Wessely, Crayford,

& Hotofp, 2001). Failure to recognize and manage patients with somatization, or related

disorders can contribute to delayed recovery and unnecessary treatment (Herrrman &

Chopra, 2009; Reid et al., 2001).

2.7.3 Investigations

There are a number of investigatory tests which may be performed when a patient presents

with a suspected seizure, although these will vary depending on the type of health service

which the patient attends and the circumstances surrounding the presentation. Presentations

can vary from a patient-initiated routine appointment with a general practitioner (GP),

to an emergency room admission. In any case, the patient may also be referred on to a

neurologist for further consideration at a later date, a practice now strongly advised by

newly released guidelines (Dunn et al., 2005; Smith et al., 1999). The tests ordered will vary,

24


depending on the temporal relationship of the presentation to the seizure, the protocols of

the health centre, the uncertainty of the seizure diagnosis, and the difficulty of identifying

a cause. There is no test for epilepsy (Ferrie, 2006) and all tests run the risk of producing

coincidental findings, which can confuse the diagnostic process. Options for investigation

include blood tests, electroencephalogram (EEG), computerized tomography (CT) magnetic

resonance imaging (MRI), and cardiovascular investigation (Adams & Knowles, 2007;

Beghi, De Maria, Gobbi, & Veneselli, 2006). Further information is provided in appendix A.

2.8 Treatment

2.8.1 The decision to commence treatment

The mainstay of epilepsy treatment is antiepileptic drugs (AEDs); effective in 60–70%

of individuals (Duncan et al., 2006; Kwan & Brodie, 2000). Nevertheless, the decision to

commence ongoing AED treatment following the confirmation of a seizure, demands

careful appraisal of the individual circumstances (Stokes et al., 2004). If a prior history of

seizures is discovered, the decision as to whether treatment should commence can be made

with the benefit of that knowledge regarding seizure recurrence. However, where a person

presents following what is believed to be a first seizure, the prognosis is more difficult to

predict. For example, a seizure which appears to have been provoked by temporary factors

would not be expected to recur if the provocative factors are resolved, hence AED treatment

is not usually considered necessary (Pohlmann-Eden et al., 2006). A single seizure with no

obvious provoking factors may indicate that the patient has a vulnerability to spontaneous

epileptic seizures, yet not all these individuals will have another seizure. Estimates for

recurrence vary, and methodological differences between studies make an overall assessment

difficult (Chadwick, 2006). Berg and Shinnar (1991) noted that published estimates of

recurrence risk ranged from 23% to 71%. However, their meta-analysis, which continues

to be highly regarded, assessed the average recurrence rate after approximately two years at

51%. The risk is highest in the days or weeks after the first attack, with approximately 30%

of recurrences in the first three months (Duncan, Shorvon, & Fish, 1995).

25


This chance of recurrence is considered to increase in the presence of certain risk factors,

including a structural abnormality of the brain thought to be responsible for the seizure, an

abnormal EEG, or a pre-existing neurological deficit (Chadwick, 2006; Duncan et al., 2006;

SIGN, 2003). In such cases treatment may be recommended after only one seizure. Also, in

cases where the patient is engaged in a high risk occupation and/or experiences unacceptable

personal anxiety at the anticipation of a recurrence, medication may be commenced

(Duncan et al., 2006; Marks & Garcia, 1998; SIGN, 2003). Otherwise, an acceptable course

of action is a ‘watch and wait’ approach (Duncan et al., 2006). If a second seizure occurs

the argument for treatment is strengthened. It was once thought that treatment after the

first seizure might be advantageous for all patients, if seizures themselves were acting on

the brain to increase seizure susceptibility. Do ‘seizures beget seizures’ was the question

(McIntosh & Berkovic, 2005). However recent evidence now confirms that immediate

treatment, although it can prevent the second seizure, will not alter the long-term outcome

(Marson et al., 2005) which is best predicted by the number of seizures in the first six months

post-diagnosis and the patient’s response to the first AED prescribed (SIGN, 2003).

2.8.2 Is treatment lifelong?

Where AED treatment is commenced, be it after the first or subsequent seizures, it will not

necessarily be lifelong. Regular reviews of treatment are recommended for all patients and

where seizures have not recurred after at least two years, withdrawal of medication may be

considered (Chadwick, 2006). Using meta-analysis of 25 studies, Berg and Shinnar (1994)

determined the overall risk of relapse after AED withdrawal at 25% in the first year and

29% after two years. The factors which affect the degree of risk have been identified as

the electroclinical syndrome, the age at onset, the underlying aetiology, the EEG, and the

severity of the epilepsy (Chadwick, 2006). Consequently, where a patient is seizure free on

medication for two years there is a chance of seizure freedom without medication, taking

into account the individual risk factors, and therefore trial discontinuation of AEDs can be

offered (Chadwick, 2006; SIGN, 2003).

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2.8.3 The use of antiepileptic drugs

More than 20 antiepileptic drugs are licensed worldwide. They act by suppressing the

symptoms (seizures) rather than modifying the disease process (epileptogenesis) (Duncan

et al., 2006). It is recommended that the prescription of AEDs be guided by the clinical

effectiveness for the particular seizure type or epileptic syndrome (SIGN, 2003). In addition,

because the use of AEDs is frequently associated with adverse effects, tolerability and the

individual circumstances of each patient are essential considerations (Stokes et al., 2004).

Studies have shown that antiepileptic efficacy can be similar for some drugs while toxicity

varies (Smith et al., 1987). Such results underline the fact that the prescription of AEDs

requires consideration of both drug efficacy and possible adverse effects in each patient

(Beghi, 2004; Brodie, 2003). The goal ‘no seizures, no side effects’ (Epilepsy Foundation,

1998) has been used to sum up the current philosophy underpinning treatment; the aim

to maximize patient well-being by eradicating seizures completely where possible, while

working to minimize adverse effects of the treatment.

2.8.4 Additional treatment options

Treatment with AEDs is effective in approximately 60% to 70% of patients (Duncan

et al., 2006). For individuals in whom seizures persist despite the use of AEDs, early

assessment for surgical intervention is recommended (SIGN, 2003). Where an individual

is considered to be an appropriate candidate for surgery, the chances of improvement are

good, with seizure freedom expected in approximately 70% of patients who undergo the

most commonly performed procedures (anterior and medial temporal lobe resection) (Marks

& Garcia, 1998; McIntosh, Wilson, & Berkovic, 2001). In paediatric practice, in cases of

severe drug-resistant epilepsy, the ketogenic diet (high fat/low carbohydrate/normal protein)

may be instigated (Stokes et al., 2004).

2.9 Summary

As the first chapter of the literature review for this thesis, chapter 2 has provided an

overview of seizures and epilepsy, including definitions, causes, epidemiology, comorbidity,

diagnosis, and treatment. The literature indicates that the definition and categorization

27


of seizures and epilepsy is a complex exercise, both theoretically and practically, and

misdiagnosis is not uncommon. Consequently in planning for a First Seizure Clinic it

can be expected that patients referred for investigation will be diagnosed with a range of

conditions, not all of which will be seizure-related. Uncertainty may be prolonged as to the

diagnosis in some cases. Where epilepsy is the diagnosis, comorbidities will be associated

including possible negative psychosocial outcomes. Chapter 3 continues the literature review

by examining psychosocial sequelae of seizures and epilepsy, in particular depression,

anxiety and stigma.

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Chapter 3

PSYCHOSOCIAL SEQUELAE OF SEIZURES AND EPILEPSY

3.1 Introduction

Chapter 3 is the second of four chapters which review the literature framing this thesis. The

focus of the chapter is psychosocial sequelae of seizures and epilepsy, beginning with a brief

historical overview of the perceived links between seizures and psychosocial status (3.2).

Then follows a discussion of contemporary research (3.3), and specific examination of three

issues of particular salience to the current research: depression (3.4.1), anxiety (3.4.2) and

stigma (3.5). The chapter concludes with a summary and a preview of the chapter to follow.

3.2 An historical perspective

Epilepsy has long been considered to have a particular relationship to mood and behaviour.

The observations of Hippocrates around 400 B.C. led him to propose a link between the

‘sacred disease’ and ‘melancholia’ (Lambert & Robertson, 1999). Aretaeus, early in the

second century, described patients with epilepsy as languid and spiritless (Attarian, Vahle,

Carter, Hykes, & Gilliam, 2003). Lacking scientific explanation, any differences observed

in people with epilepsy were shaped by superstition and stigma; people with epilepsy were

often considered to be possessed by demons, or ‘lunatics’, affected by the lunar cycle (Masia

& Devinsky, 2000). In the 15th century epilepsy was branded as a behavioural characteristic

of witches (Goldstein & Harden, 2000). This background appears to have exerted an

ongoing negative influence on the depiction of people with epilepsy, despite the evolution

of scientific understanding and research (Jacoby & Austin, 2007). For example, the medical

text Insanity and Allied Neuroses published in 1886, defined epilepsy as a symptom of insanity

often associated with ‘sexual excesses’ (Llewellyn, 1998). The concept of a relationship

between brain pathology and behaviour led Cesare Lombroso to propose in the late 19th

century, that epilepsy (or ‘subclinical’ epilepsy) was the essential neurological basis for

criminal behaviour. This hypothesis was later disproved (Hermann & Whitman, 1992).

29


3.3 Contemporary research

Despite the passing of time and advances in the understanding of epilepsy, a paper

published in 1996 noted that people with epilepsy were ‘… generally considered to be at

greater risk of psychopathology and more likely to be socially dysfunctional than people

without epilepsy…’ (Jacoby et al., 1996, p. 148). This position is still commonly stated,

although it is also generally agreed that the reasons are not well understood despite attempts

to identify and explain the contributing factors (Boro & Haut, 2003; Devinsky, 2003;

Schmitz, 2005). The early investigative models in epilepsy have been criticized on the

grounds that such models assumed, almost implicitly, that non-medical problems were more

or less inevitable and that their severity co-varied directly with the severity of the medical

condition (Collings, 1990). Collings (1990) noted that early studies were narrowly focussed

on particular populations and issues, rarely involved comparisons with non-epilepsy groups,

and had often employed data collection methods which were non-systematic, subjective

and clinically oriented. A research bias may have been created by reliance on the data of

specialized epilepsy clinics, leading to an overestimation of psychosocial problems. ‘Studying

patients with epilepsy does not necessarily inform us about people with epilepsy’ (Hermann

& Whitman, 1992, p. 1135).

In recent years researchers have attempted to rectify these research shortcomings

with investigations that are more systematic in their methodology and broader in their

recruitment base. In addition, outcome measures have evolved to assess patient well-being as

a more holistic concept, sometimes utilizing Quality of Life (QOL) as the outcome measure.

Interestingly the negative impact of epilepsy on psychosocial outcomes remains a strong,

continuing theme of the results (Jacoby & Baker, 2008). In one early attempt to broaden

the research data, Collings (1990) established a study to compare well-being in people with

epilepsy, with that of a group without epilepsy matched for age, gender and socio-economic

indicators. His results demonstrated lower levels of well-being among the sample of people

with epilepsy, related to a combination of clinical, psychological and social factors including

self perception, seizure frequency, feelings of certainty about the diagnosis, the time since

diagnosis, and employment status.

30


The findings of Collings were echoed by a large European study of over 5000 people

(Baker, Jacoby, Buck, Stalgis, & Monnet, 1997). In that study, which assessed the impact

of epilepsy on social and psychological well-being, half of all respondents felt stigmatized

by their epilepsy and respondents reported that epilepsy and its treatment had a significant

impact on a number of different aspects of their daily lives. The study found that, as

measured by their scores on the SF-6 (a generic health status measure), the UK respondents

were more dysfunctional in all domains than people in the general population who had no

long-standing illness. When compared to those in the general population who had some

other long-standing illness, scores for respondents were poorer in all but three domains

(Baker et al., 1997). The US data from the 1998 Texas Behavioural Risk Factor Surveillance

System found people with epilepsy reported more physically unhealthy days, more mentally

unhealthy days, more days of depression, more days of anxiety, more days of insufficient

sleep or rest, and fewer days of vitality in the survey period (Centers for Disease Control and

Prevention [CDC] 2001). A US community survey of 1023 people found fear, uncertainty

and unpredictability of seizures caused concern for people with epilepsy. They also faced

stigma, lower rates of marriage, higher rates of unemployment, lower household incomes,

struggled with education and poor self-image (Fisher, 2000). Data from the US National

Health Interview Survey 2001, found that people with seizures were significantly more

likely than those without, to report that they experienced all the measures of psychological

distress, sleep impairment and pain assessed in the survey (Strine et al., 2005). The US

HealthStyles survey by self-report in 2004 found depression and anxiety were twice as

likely to be reported for the previous year by people with epilepsy, than by those without.

Those with seizures in the last three months, or on antiepileptic drugs (AEDs), were three

times more likely to report depression and anxiety (Kobau, Gilliam, & Thurman, 2006). In

Canada using a national population health survey, Tellez-Zenteno, Patten, Jette, Williams,

and Wiebe (2007) found an increased prevalence of mental health disorders among people

with epilepsy compared with the general population.

Despite the ever increasing bank of data which continues to highlight reduced well-being

and QOL outcomes amongst people with epilepsy, cause and effect issues are yet to be

clearly understood (Jacoby & Baker, 2008). However, one recurring theme is that clinical

31


factors are not necessarily good predictors of QOL (Privitera & Ficker, 2004). For example,

a large cross-sectional study of unselected patients by Baker et al. (1996) found that even

patients with infrequent seizures who might be considered by some to have good control,

had a compromised QOL. This finding was echoed by O’Donoghue, Goodridge, Redhead,

Sander and Duncan (1999) in a study of 309 patients drawn from general practice; even

a low frequency of seizures was associated with psychosocial handicap. Remission from

seizures however, has been associated with improved QOL scores (Jacoby & Baker, 2008;

Stavem, Loge, & Kaasa, 2000). An extension of this observation is to note that amongst

the QOL data there are some positive perspectives emerging where studies have been able

to investigate the impact of just a single seizure, or a few seizures only (Belissaris, Wilson,

Saling, Newton, & Berkovic, 2007). For individuals affected in this way Jacoby and Baker

(2008) make the observation that, despite the likelihood of a sudden dip in QOL following

the first seizure event, there may be a fairly quick return to almost normal functioning

(when compared with the general population) with QOL comparable to that before the

seizure.

One other interesting finding to emerge from ongoing research is that depression and

anxiety strongly affect QOL outcomes in epilepsy, with both being significant predictors

of QOL impairment independent of seizure frequency and seizure control (Attarian et

al., 2003; Boylan et al., 2004; Perrine et al., 1995; Gilliam et al., 2003; Johnson et al., 2004;

Kanner, 2003; Lehrner et al., 1999). The relationship of depression and anxiety to epilepsy

will now be discussed in greater detail, followed by consideration of stigma, which is also a

recurring issue in many of the QOL studies and regarded by some as a central feature in the

condition (Baker, 2002a).

3.4 Psychiatric disturbance

A spectrum of psychiatric disturbances arises in epilepsy patients under a variety of

circumstances. At times they are directly related to the abnormal brain activity associated

with the seizure such as during the ictal or peri-ictal phases. Interictal psychiatric

disturbances however, are chronic and not directly related to the seizures. It is interictal

disorders which are the focus of this discussion. The aetiology of interictal psychiatric

32


conditions in people with epilepsy is generally described as multifactorial. Key contributing

factors are the effects of medication (iatrogenic factors), psychosocial difficulties, and brain

dysfunction that may or may not be directly connected to the epilepsy itself (Lambert &

Robertson, 1999; Marsh & Rao, 2002; Swinkels et al., 2005). These factors are examined in

greater detail below.

Psychiatric disturbance in patients with epilepsy tends to be under-recognized. This failure

to act on psychiatric symptoms may be due to both the clinician and patient minimizing

the significance of the symptoms, because they consider depressive and anxiety symptoms

a reflection of normal adaptation to the condition (Kanner & Palac, 2000), or to a belief

that treatments are ineffective, or will exacerbate seizures (Swinkels et al., 2005). In a review

of psychiatric comorbidity in chronic epilepsy, published in 2000, the authors commented

that ‘…there is presently only a preliminary understanding of the additional burdens posed

by comorbid psychiatric disorder in chronic epilepsy, even though these burdens seem to

be significant’ (Hermann, Seidenberg, & Bell, 2000, p. S36). The authors concluded that

mood disorders were the most common lifetime-to-date diagnosis in such patients followed

by anxiety disorders. Major depression was found to be the most prevalent of the mood

disorders (Hermann et al., 2000). A growing awareness of the importance of this issue

was evident at the second National Conference on Public Health and Epilepsy in the US

(Epilepsy Foundation, 2004), where recognition of the substantial psychiatric comorbidity

in people with seizure disorders or epilepsy led to identification of this as a priority area for

action (Strine et al., 2005).

3.4.1 Depression

The presence of depression is usually confirmed by the assessment of certain diagnostic

criteria described in the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV)

(American Psychiatric Association, 2000). Symptoms include depressed mood, loss of

interest or pleasure, significant appetite or weight loss or gain, insomnia or hypersomnia,

psychomotor agitation or retardation, fatigue or loss of energy, feelings of worthlessness

or excessive guilt, impaired thinking or concentration/indecisiveness, suicidal thoughts/

33


thoughts of death. Where at least five of the symptoms have been present for at least

two weeks, in conjunction with either of the first two, major depression is considered as

the diagnosis (Mitchell, 1997). Despite agreed criteria, arriving at a definite diagnosis of

depression is not necessarily straightforward. The patient’s perception of symptoms, the

quality of the doctor/patient communication, the presence of comorbid conditions, and

the experience of the health practitioner are just a few of the factors which will affect the

diagnostic process. Both over and under-diagnosis can occur, both of which can impact

negatively on patient well-being (Mitchell, Vaze & Rao, 2009). The 12-month prevalence of

depression in Australia has been estimated at approximately 6% following a National Survey

of Mental Health and Wellbeing (Australian Bureau of Statistics, [ABS], 2008). The survey

data indicated that affective disorders were more frequent in females than males. However,

data collection will always be influenced by the method of measurement and classification.

In the case of these data, it has been suggested that the study methodology, by utilizing the

Composite International Diagnostic Interview (CIDI), may have led to an underestimation

of the depression figure (Goldney, Hawthorne, & Fisher, 2004).

The medical and psychosocial burden of depression is seen to be increasing worldwide

and figures from WHO project that by 2020 depression will constitute the second most

significant burden of disease, second only to cardiovascular disease (Michaud, Murray,

& Bloom, 2001). For any person with a chronic medical condition, depression has been

identified as a serious factor influencing morbidity, mortality, and overall prognosis (Barry et

al., 2008; Hermann et al., 2000; Swinkels et al., 2005). A recent WHO World Health Survey

demonstrated that depression produces the greatest decrement in health compared with four

selected chronic diseases (angina, arthritis, asthma and diabetes). This survey found that the

comorbid state of depression incrementally worsens health compared with depression alone,

with any of the chronic diseases alone, or with any combination of the chronic diseases

without depression (Moussavi et al., 2007).

34


3.4.1.1 Depression and epilepsy

The epidemiological data describing depression in epilepsy are varied, and subject to

ongoing debate due to diverse research methodologies and sample populations with

potential selection bias and self-reported diagnoses (Gilliam & Kanner, 2002; Salzberg &

Vajda, 2001). Under-reporting of symptoms by patients and under-diagnosis by clinicians,

also contributes to poor quality information (Kanner, 2003). Nevertheless, published studies

indicate a prevalence of 20% to 55% in patients with recurrent seizures and 3% to 9% in

patients with controlled epilepsy (Barry et al., 2008; Kanner, 2003). When the psychiatric

comorbidity in epilepsy is compared to psychiatric comorbidity in other central neurological

conditions, the rates have often been found to be comparable (Evans & Charney, 2003;

Kanner, 2005; Marsh & Rao, 2002). However, a US population based study into the lifetime

prevalence of depression, epilepsy, diabetes, asthma and other chronic medical disorders

found higher rates of depression in those with epilepsy than healthy respondents and those

with diabetes and asthma (Kanner, 2005). A community based study assessing the frequency

of depression symptoms in a sample of epilepsy, asthma, and healthy control subjects,

also found that people with epilepsy had higher depression scores than those of either the

asthma or control group (Ettinger, Reed, Cramer, & Epilepsy Impact Project Group, 2004).

When evaluating any psychiatric phenomenon in association with epilepsy, it is necessary, as

noted earlier, to first consider the temporal relationship of the phenomenon to the seizures

(Gilliam & Kanner, 2002). Symptoms can be a direct expression of an epileptic seizure

(i.e. the ictal state), or features of a peri-ictal state (i.e. postictal, or preictal/prodromal

phases that are temporarily associated with seizures, but are not manifestations of epileptic

discharges) (Gilliam & Kanner, 2002; Lambert & Robertson, 1999; Marsh & Rao, 2002).

Interictal psychiatric disorders are not directly related to the ictal electrical discharge

(Robertson, 1991). Such disorders can be identical to those encountered by non-epileptic

patients, or they can be atypical (Blumer, Montouris, & Davies, 2004; Gilliam & Kanner,

2002; Swinkels et al., 2005). The lack of recognition and treatment for interictal depression

(Ettinger et al., 2004) may stem partly from a misconception in medicine that depressed

mood is a normal reaction to the various social and personal obstacles caused by medical

illness (Barry, 2003; Kanner, 2003; Strine et al., 2005).

35


Factors contributing to depression in epilepsy are multifactorial (Harden, 2002) and tend

to be grouped under three main headings: neurobiological, iatrogenic and psychosocial

(Barry, 2003). Neurobiological factors which have been put forward include age of onset,

aetiology and underlying neuropathology, duration of the disorder, seizure frequency, type

and location, severity and laterality (Harden, 2002; Herman & Whitman, 1992). Kanner

(2003) suggests that the intractability of the seizure disorder does not seem to be an

independent risk factor for the occurrence of depression, and others have noted that in

patients whose seizures suddenly become well-controlled by AEDs, there can sometimes be

a paradoxical onset of depression, which they consider may have resulted from the ‘forced

normalization’ of seizure activity (Harden & Goldstein, 2002). Debate continues as to the

relative contribution of all these factors (Barry, 2003). In addition, a bidirectional link (also

perceived in other neurological conditions) (Kanner, 2003) has been indicated by studies

identifying depression as a risk factor for seizures. For example, in a Swedish population-

based control-study of patients with newly diagnosed epilepsy, Forsgren and Nystrom (1990)

found that a history of depression preceding the onset of epilepsy was six times more

frequent among patients than controls. Hesdorffer et al. (2000) found that patients were

nearly four times more likely to have had a history of depression preceding their first seizure.

Iatrogenic factors contributing to depression can arise as a result of AED treatment

(Robertson, 1991) since all AEDs can have psychotropic properties in different patients, and

some are especially known for their association with depression and behavioural changes.

Polypharmacy increases the risk of adverse effects (Barry et al., 2008; Boylan, Devinsky,

Barry, & Ketter, 2002; Lambert & Robertson, 1999). Barbiturates such as phenobarbital and

primidone can cause problems with cognition, motivation, energy, depression, hyperactivity,

irritability, aggressiveness and impotence. Topiramate has been associated with behavioural

changes including depression and irritability. Vigabatrin has been associated with depression

and psychosis; and tiagabine, felbamate, leviteracetam, zonasimide, phenytoin, valproate,

adrenocorticotropic hormone (ACTH) and acetazolamide have been reported to trigger

symptoms of depression. (Barry et al., 2008; Boylan et al., 2002; Harden, 2002; Robertson,

1991; Salzberg & Vajda, 2001). In some cases, symptoms can be triggered by the withdrawal

of AEDS (e.g., lamotrigine, valproate, carbamazepine) (Barry et al., 2008).

36


Suggested psychosocial factors connected with depression in epilepsy include social support,

experienced or perceived stigma, fear of seizures and their unpredictability, external locus

of control, stressful life events, low self esteem, female gender, poor adjustment to epilepsy,

poor vocational adjustment and financial stress (Barry, 2003; Hermann & Whitman, 1992;

Lambert & Robertson, 1999; Marsh & Rao, 2002; Mittan, 1986).

When assessing the relationship between depression and epilepsy it is apparent that the

relative significance of, and the interaction between, neurobiological, iatrogenic and

psychosocial factors is inadequately understood (Harden & Goldstein, 2002; Swinkels et al.,

2005; Wilson, Bladin, Saling, McIntosh, & Lawrence, 2001). It has been argued by Hermann

and associates, that of these three areas, research has focussed more heavily on the

neurobiological factors (Hermann et al., 2000; Whitman & Hermann, 1989). They suggest

that such an approach is limiting, and that psychosocial research has been more fruitful.

A review of 36 studies found that whereas neuro-epilepsy variables had been the most

frequently investigated predictors of interictal depression, they resulted in the fewest positive

findings. Psychological, social, and medication variables were evaluated less frequently but

they were associated more often with depression than neuro-epilepsy variables (Hermann et

al., 2000). However, the authors did note some uncertainty related to the results of some of

the psychosocial measures. They emphasize the ongoing need for a research paradigm that

does not pursue neurobiological predictors of psychopathology to the exclusion of social and

medication variables (Hermann et al., 2000; Whitman & Hermann, 1989).

The successful management of a patient with epilepsy demands consideration of depression

for a variety of reasons. As discussed above depression is a strong predictor of poor QOL

outcomes in patients. (Cramer, Brandenburg, & Xu, 2005; Gilliam et al., 2003; Kanner &

Balabanov, 2002). In addition, although the figures are subject to debate (Chapell, Reston, &

Snyder, 2003; Christensen, Vestergaard, Mortensen, Sidenius, & Agerbo, 2007; Jones et al.,

2003; Logroscino & Hesdorffer, 2005; Pompili, Girardi, & Tartarelli, 2006) it is generally

agreed that the rate of suicide in patients with epilepsy is higher than the general population

(Barry et al., 2008) and the presence of comorbid depression (and anxiety) increases that

risk (Barry et al., 2008). It has also been demonstrated that clinically depressed people

37


with epilepsy perceive higher levels of severity and bother from seizures, indicating greater

problems with perceived seizure recovery than non-depressed people experiencing similar

types of seizures (Cramer, Blum, Reed, & Fanning, 2003). If depression affects reports of

seizure activity, it is important to assess patients for depression in order to take this influence

into account. Another important impact of depression is the effect which it appears to have

on health care utilization. A study by Cramer, Blum, Reed, Fanning, and Epilepsy Impact

Project Group (2004) found that in the sample of people with epilepsy, those with clinical

symptoms of depression used more health resources than all other types reviewed. The

greatest use occurred in people with severe symptoms of depression.

Screening for depression is recommended by a number of authors on the premise that

improved detection of symptoms, with subsequent treatment, offers the opportunity of

improved patient outcomes (Barry et al., 2008; Cramer, 2003; Strine et al., 1995). However,

the concept of screening for psychiatric disorders is controversial in medicine generally.

Some doubt its effectiveness, challenge the cost attached, and note that it is not a guarantee

of ongoing effective treatment (Gilbody, House, & Sheldon, 2001, 2008). Nevertheless,

support for the concept of screening in epilepsy management is strong, and a recent

consensus statement recommends suitable instruments (Barry et al., 2008). Measuring of

symptoms is also seen to be essential for ongoing outcome assessment of depression and

anxiety in any setting (Hickie, Andrews, & Davenport, 2002).

Once depression is identified in a patient with epilepsy, a range of management strategies

are recommended. Not all causes may be amenable to change through treatment, and

initially it is considered useful to look for any potentially reversible cause, such as negative

psychotropic effects, that may occur with some antiepileptic medication (Kanner &

Balabanov, 2002). Negative effects may have been induced by a new AED, or positive

effects removed by the cessation of an AED (Gilliam & Kanner, 2002). The risk of inducing

or exacerbating depression should be in mind when prescribing AEDs (Ettinger, 2006).

There has been a fear of treating depression in epilepsy because of the theoretical risk that

antidepressants lower the seizure threshold, yet the actual risk is small (Gilliam & Kanner,

2002; Salzberg & Vajda, 2001). Serotonin specific reuptake inhibitors (SSRIs) have a more

38


favourable profile then tricyclic antidepressants (TCAs) in respect to lowering of the seizure

threshold and are therefore the drug of first choice. Electroconvulsive therapy (ECT) is not

contraindicated, and can be considered in severe cases (Kanner & Balabanov, 2002; Kanner

& Palac, 2000). Management strategies which focus on strengthening coping mechanisms

are also important including both therapeutic and educational approaches. These are

discussed in chapter 5.

3.4.2 Anxiety

Anxiety is a normal emotion. However, when the intensity and duration of anxiety exceeds

what is typically expected for a given situation, it may be described as a pathological state

consisting of an anxiety disorder (Marsh & Rao, 2002). Anxiety is a relatively common

condition with the Australian Survey of Mental Health and Wellbeing reporting the

12-month prevalence of anxiety disorders in Australia to be approximately 10% (ABS,

2008). This study also found the rate of anxiety disorders was higher in females than

males. Symptoms of anxiety include the features of the ‘fight and flight’ response, such as

rapid heart rate, the need to overbreathe, tremor, shaking, nausea and sweating. Where

hyperventilation occurs patients may also complain of dizziness, light-headedness, tingling

and numbness (Andrews & Hunt, 1998). High levels of anxiety can impair performance by

reducing the capacity to plan, make accurate judgements, carry out skilled tasks, or even

to comprehend useful information. Treatment with medication is an option. However, it is

suggested that anxiety disorders can respond better to psychological techniques than they

do to medication, and that such techniques offer an opportunity to cure, not just manage,

symptoms (Andrews & Hunt, 1998).

3.4.2.1 Anxiety and epilepsy

There are methodological difficulties in assessing the prevalence of anxiety disorders in

people with epilepsy, and studies suggest varied rates (Swinkels et al., 2005). Hospital-based

studies have found prevalence rates of around 30% (Jones et al., 2005; Smith, Baker, Dewey,

Jacoby, & Chadwick, 1991). Community based studies however, have produced lower

rates, up to 25% (Jacoby et al., 1996) and 20.5% (Mensah, Beavis, Thapar, & Kerr, 2007).

39


Lower figures, which were nevertheless elevated compared to those in patients without

epilepsy, were found in a particularly large UK national community based study of primary

care records. Comparing epilepsy patients with all others, the rate of anxiety disorders in

5834 people with epilepsy was 11%, compared to 5.6% in 831,163 people without epilepsy

(Beyenburg, Mitchell, Schmidt, Elger, & Reuber, 2005). In children, a study by Ettinger et

al. (1998) found 16% met criteria for significant anxiety symptomatology. In regard to the

frequency of particular anxiety subtypes in epilepsy patients; it is difficult to draw many

conclusions as data are limited (Beyenburg et al., 2005). Despite the evidence suggesting

that anxiety disorders are common among people with epilepsy, anxiety is often under-

recognized and under-treated (Gilliam et al., 2003; Goldstein & Harden, 2000; Johnson et

al., 2004; Mensah et al., 2007). In addition, the relationship between epilepsy and anxiety,

and the impact of the anxiety on patient outcomes, have been slow to receive research

attention (Goldstein & Harden, 2000; Vazquez & Devinsky, 2003; Zeber et al., 2007).

As with depression, anxiety can be associated with epilepsy in various ways. It can be

present during a seizure (ictal manifestation), an anticipatory fear of seizures, an after effect

of a seizure, an interictal manifestation of the same underlying mechanism as the seizures,

an adverse effect of medication, an adverse consequence of maladaption to having epilepsy,

or an unrelated comorbid primary psychiatric disorder (Goldstein & Harden, 2000). Careful

history taking is necessary to clarify the temporal relationship of symptoms to seizure

occurrence, and their relationship to the seizure disorder (Beyenburg et al., 2005). Increased

seizure activity has been associated with anxiety in some studies (Akanuma, Hara, Adachi,

Hara, & Koutroumanidis, 2008; Jacoby et al., 1996; Mensah et al., 2007), but not all (Piazzini

& Canger, 2001; Smith et al., 1991). Questions have also been raised whether anxiety itself

can worsen seizure activity (Vazquez & Devinsky, 2003) and one interesting study in adults

with partial epilepsy, found higher seizure frequency associated with lower anxiety levels

than low seizure frequency. The authors posed the question as to whether, in some cases,

having more seizures actually reduces the anxiety of seizure anticipation (Goldstein, Harden,

Ravdin, Nikolov, & Labar, 1999).

40


The understanding of anxiety in epilepsy is challenged by the same complex

interrelationship of neurobiological, iatrogenic and psychosocial factors that are associated

with depression and epilepsy (Goldstein & Harden, 2000; Marsh & Rao, 2002; Mensah et al.,

2007; Vazquez & Devinsky, 2003). Anxiety, like depression, has been shown to be correlated

with lower QOL in people with epilepsy, regardless of seizure type or severity (Johnson et

al., 2004). Although anxiety and depression can occur together (Murphy et al., 2004), it has

been shown that anxiety makes its own independent contribution to patient QOL outcomes.

When considering the differing contributions of anxiety and depression to QOL in patients

with partial epilepsy, Cramer et al. (2005) found that the presence of either mild depression,

or anxiety, resulted in clinically important reductions in total QOLIE-10 scores. (The

QOLIE-10 (Cramer et al., 1996) is a brief QOL measure). The QOLIE-10 scores continued

to decline as increases occurred in either anxiety or depression.

Despite the indications that identification and treatment of anxiety is important to patient

outcomes (Johnson et al., 2004), recognition and treatment of anxiety remains inadequate

(Vasquez & Devinsky, 2003). Treatment of anxiety can be effective in people with epilepsy,

without compromising the management of the epilepsy (Beyenburg et al., 2005). However,

while recognition, understanding, and treatment of anxiety symptoms and disorders remains

suboptimal, chances to improve overall outcomes and QOL of people with epilepsy will be

missed (Goldstein & Harden, 2000).

3.5 Stigma

The term stigma originated with the Greeks. It refers to signs cut or burnt into the body,

designated to mark the bearer as a criminal, slave, or social outcast; someone to be avoided

(Saylor & Yoder, 1998). Today the term applies more broadly to conditions, traits or

behaviours that mark the bearer as culturally unacceptable (Williams, 1987). The publication

by Erving Goffman (1963), Stigma: Notes on the Management of Spoiled Identity, underpins much

contemporary discussion on this topic. Goffman, defined stigma as an attribute that is

deeply discrediting (Williams, 1987) which reduces the bearer in our minds ‘…from a whole

and usual person to a tainted, discounted one’ (Goffman, cited in Williams, 1987, p. 139).

41


He suggested that stigma stems from the definitional workings of society because before a

difference can matter much it must first be conceptualized by society as a whole (Williams,

1987). As the literature on health related stigma has continued to develop stigma is seen

less as an attribute or trait and more as a process shaped by structural and cultural forces

(Scambler, Heijnders, & van Brakel, 2006). Where differences to societal norms result in

unfair discrimination against individuals, stigma may be said to be enacted (Jacoby, 2002).

However, where an individual feels shame because of the condition, and perceives the

condition to be discreditable, the experience is usually referred to a ‘felt or perceived stigma’

rather than ‘enacted stigma’ (Jacoby 2002; Scambler & Hopkins, 1986).

Stigma-related stress may be harmful to health, but in addition, mechanisms of

discrimination can place a person at a social disadvantage in relation to money, power,

prestige and social connections. These factors can affect access to health services, but the

fear of stigma may also lead patients to avoid seeking treatment. Community discrimination

may shape services to be less desirable than they might otherwise be; community attitudes

may limit health research, and services may fail to attract staff (Link & Phelan, 2001).

Increasing recognition of the effect of stigma on shaping health outcomes has led to a

strengthening focus on stigma and its relation to public health (Weiss, Ramakrishna, &

Somma, 2006), with the US National Institute of Health (NIH) establishing a Stigma and

Global Health Research Program (http://www.fic.nih.gov/programs/research_grants/

stigma/).

3.5.1 Stigma and epilepsy

Seizures can challenge the norms of social behaviour. They are unpredictable, and in some

cases involve unusual physical actions and loss of control over bodily functions. Bagley

(1972) suggests that the person with epilepsy is ‘…feared and hated because he did what we

are afraid we will do ourselves. He loses control – basic control of his motor movements. He

reverts to the ‘primitive’, so that the punishment of him (by social rejection and ostracism)

appears to be justified’ (Bagley, 1972, p. 38). Superstition and stigma have surrounded people

with epilepsy for thousands of years, creating formal and informal barriers to participation

in community life, many of which still exist (Masia & Devinsky, 2000; Snape, Jacoby &

42


Baker, 2005). Diverse examples of stigma and discrimination have been documented

internationally (Morrell, 2002; Pahl & de Boer, 2005) and the impact of stigma in epilepsy

has been included as an outcome measure in number of studies (Baker, 2002a). In Australia,

the Human Rights Commission reported that epilepsy is often experienced as a severe social

handicap because of the stigma which is attached to it (Sheehan, 1985).

Accurately gauging the extent of enacted stigma and public discrimination against people

with epilepsy is challenging. In surveys there may be differences between how people

say they behave, and how they do behave. In their assessment of epilepsy related stigma,

Scambler and Hopkins (1986) concluded that belief in strong public discrimination against

people with epilepsy is speculative and lacking in supportive evidence. They suggested that

it is fear of discrimination which is the main source of the problem, with felt or perceived

stigma emanating from fear of enacted stigma and feelings of shame associated with having

epilepsy. Their research revealed that in the group of patients they interviewed, almost

without exception, the respondents were upset or even resentful when given the diagnosis.

These respondents reported feeling that receiving the diagnosis had made them into

‘epileptics’, which they defined as ‘…first and foremost a stigmatizing condition (Scambler &

Hopkins, 1986, p. 139). This suggests that, at least initially, that the sense of stigmatization

in these individuals had nothing to do with whether or not they had experienced any overt

discrimination, but rather was driven by inner references such as internalized community

values. Perceived stigma can lead people to disguise or hide their epilepsy (Schneider &

Conrad, 1980) and it is also often associated with dysphoria, anxiety, low self-esteem,

helplessness, and somatic symptoms (Marsh & Rao, 2002). Dilorio et al. (2003) found

perceived stigma to coexist with negative beliefs about management of epilepsy and Jacoby

(2002) also found a cluster of negative psychosocial scores associated with stigma in

epilepsy. Nevertheless, evidence of association does not establish a direct causal link.

To avoid a stigmatizing diagnosis of epilepsy, individuals may avoid medical assessment,

or choose non-compliance with treatment so as not to confirm or reveal their condition

through adherence to a treatment regime (Link & Phelan, 2001). Such strategies may

increase seizure-related risks. They can also lead to increased anxiety and add to the sense of

43


shame (Williams, 1987). Ironically, the actions of health professionals can negatively affect

a patient’s perception of epilepsy (Jacoby, 2002) therefore, management strategies need to

be carefully assessed to ensure they do not exacerbate a sense of stigma. For example, when

video monitoring of seizures first began, some hospitals would not allow patients to view

the video of their own seizures. The aim was to protect the patient from viewing images of

themselves which could be distressing. Nevertheless, this approach implied that witnessing

a seizure, especially one’s own, is embarrassing and unpleasant. After investigation it was

demonstrated that if people were supported through the process of viewing their seizures,

it was not such a negative experience (Sanders, Bare & Lesser, 1995). Similarly, encouraging

a person with epilepsy to hide their condition for example, may seem to be a pragmatic

strategy. However, the suggestion attaches a level of unacceptability to the condition,

which the person with epilepsy may not have otherwise felt, and can be described as stigma

coaching (Jacoby, 2002). An alternative approach for health professionals is outlined by

Saylor and Yoder (1998) who argue for a model of health care characterized by a more

equitable sharing of power and goals. They suggest that the…manner in which health care is delivered may increase or decrease the effects of stigma. Encouraging a client’s participation in health care decision making is an outward demonstration of respect and regard for that person. Treating a client as a partner in establishing goals demonstrates one’s acceptance of the individual as valuable. On the other hand, when health providers make decisions regarding treatment of goals without consulting a client, they reinforce the client’s feelings of being discredited. Therefore, any mode of delivery that increases client participation enhances that person’s perception of self-worth and therefore reduces the effects of stigma (p. 15).

Despite a stream of information describing the relationship between stigma and epilepsy,

investigative studies of interventions to reduce stigma are limited (Jacoby, 2008). However,

theories have been proposed. Morrell (2002), like Saylor and Yoder (1998) focusses on

medical services, although the emphasis is on content rather than framework. She argues

that the reduction of epilepsy related stigma will be one outcome of good quality medical

care, rapid seizure control, and accurate information for the community as a whole. With

this in mind, it is interesting to consider two studies. The first included people who had

been seizure free for two years, of whom 14% returned a positive score for felt stigma.

Subjects scoring high for stigma were more likely to have been seizure free for less time.

44


They were also more likely to worry about their condition and to have low scores for health

status (Jacoby, 1994). In the second study, in a cohort of newly diagnosed epilepsy patients,

approximately one quarter of respondents reported feeling stigmatized. At the two year

follow up, of those who were still having seizures, 44% reported stigma, while of those

without seizures, 14% reported stigma. (Jacoby, Gamble, Doughty, Marson, & Chadwick,

2007) This evidence suggests that freedom from seizures may reduce the sense of stigma.

Activities specifically aimed at targeting stigma in epilepsy are now being promoted by the

US Centers for Disease Control (http://www.cdc.gov/epilepsy/program_activities.htm#2),

which illustrate the importance being given to stigma in the public health arena. However

key authors on this topic have noted a range of issues which must be considered if change

is to occur, for example, any education process needs to involve not only the affected

individual, but also family, friends, educators, potential employers, health insurers, the media

and policy makers (Morrell, 2002). Strategies for interventions need to be both epilepsy-

specific and culturally specific (Baker, 2002a; Weiss et al., 2006), and intervention-outcome

studies will need more clearly defined outcome measures of stigma (Birbeck, 2006).

3.6 Summary

Chapter 3 examined psychosocial sequelae of epilepsy. An historical overview introduced

the topic, highlighting the negative attitudes to epilepsy that have existed for centuries. So

deeply entrenched were these opinions that even the early scientific research is considered

to have been influenced by the stereotyping and stigma woven into community traditions.

Some of the initial studies into the psychosocial characteristics of people with epilepsy

also appears to have suffered from methodilogical flaws due to the recruitment of limited

population groups, and the narrow focus of investigations. This is, no doubt, partly due to

the difficulty of identifying and recruiting a broad range of participants outside of medical

settings. As a result, it is possible that there has been an overestimation of psychosocial

difficulties associated with epilepsy. However, gradually an expanded database of epilepsy

information has developed internationally and, although there is a persistent theme of

psychosocial comorbidity associated with epilepsy, stratification of results with broader

population-based samples has allowed for more reflective conclusions which can identify

specific sub-groups and particular areas of need or opportunity for enhanced management.

45


One key area of comorbidity demanding attention is that of psychiatric disorders, especially

depression and anxiety. Both occur more frequently in people with epilepsy than in the

general population and both negatively affect QOL outcomes. These psychiatric disorders

also contribute to increased suicide rates, greater problems with perceived seizure recovery,

and increased utilization of health resources. Whereas treatment of both anxiety and

depression is available, awareness is lacking regarding the safety and effectiveness of

such treatment in people with epilepsy and little data has been gathered on non-medical

strategies. Both conditions remain under-recognized and under-treated in this patient group,

hence the call to increase screening strategies.

Stigma also continues to be an issue of particular concern in the management of epilepsy.

Some consider it to be a central feature of the condition. As either ‘enacted’ or ‘felt’ stigma it

has the potential to affect health and well-being on many levels. Apart from stigma related

stress, discrimination or fear of discrimination can negatively affect access to health care,

employment, and social interaction, creating a negative spiral and strongly affecting quality

of life. Although research into stigma generally, and epilepsy related stigma specifically, is

limited, it would appear that the elimination of seizures offers the possibility of reducing

stigma significantly. At the same time, a range of strategies involving health professionals

and the community are required to reshape community attitudes.

There are opportunities for educational and social support interventions to play a greater

role in ameliorating depression, anxiety and stigma amongst people with epilepsy, although

the frameworks of epilepsy care currently do little to facilitate their delivery. Policy changes

are occurring which may improve patient management by placing greater emphasis on

support. Chapter 4 examines these developments in more detail.

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Chapter 4

Frameworks for the management of seizures and epilepsy

4.1 Introduction

Chapter 4 summarizes the frameworks of care available to patients who experience seizures

and epilepsy, beginning with a brief historical reflection (4.2). This is followed by a discussion

of current epilepsy care touching on factors which have shaped, and continue to influence,

the evolution of care internationally (4.3). Recently published guidelines for epilepsy care are

outlined, and the evidence which has contributed to their development is considered (4.4).

The guidelines note the need to provide information and counselling for seizure patients,

providing a basic framework for the intervention which forms part of the current study. The

chapter finishes with a summary and a preview of the following chapter (4.5).

4.2 An historical perspective

Hippocrates taught that for epilepsy the seat of the disorder was the brain. However,

this concept did not begin to take root until the 17th and 18th centuries after which, with

the passage of time, neurology emerged to become a discipline distinct from psychiatry

(Reynolds, 2005). The first effective antiepileptic drug (AED) was bromide, introduced in

1857, the same year that a London hospital for the ‘paralyzed and epileptic’ was established

(Cascino, 2001). Additional pharmacological treatments slowly became available with

phenobarbitol introduced in 1912 and phenytoin in 1938. Since 1960 a number of new drugs

have been developed in line with better understanding of the pathophysiology of epilepsy

(Reynolds, 2005). In addition, greater availability of magnetic resonance imaging (MRI) has

been a significant catalyst for improving the diagnosis and management of the condition,

assisting in brain imaging, and the refinement of surgical techniques (Engel, 2005).

Surgery is now considered as an early treatment option (Sutula, 2005). Research funding

has gradually increased, with research findings underpinning ongoing improvements in

treatment. However, estimates in the US indicate that spending is still less per head than

47


for other neurological conditions (Sutula, 2005). Despite advances in the management of

epilepsy, a recent worldwide snapshot of epilepsy care found it to be grossly inadequate

in most countries compared with the needs and the low-income countries, as might be

expected, have extremely meagre resources (Dua, de Boer, Prilipko, & Saxena, 2006). A

study of care in Europe noted that even European countries with the best provision of

epilepsy care have problems with lack of comprehensive care, lack of epilepsy specialists, and

lack of knowledge about epilepsy within the medical profession (Malmgreen et al., 2003).

4.3 Current epilepsy care

4.3.1 Seizures in the Emergency Department

Patients who experience seizures, either new-onset seizures or recurrent seizures, will often

present to the Emergency Department (ED). They may be admitted for further care or

referred on for follow up and non-emergency assessment. Studies have found that although

seizure disorders are common in the emergency department, the management in this setting

is not always optimal, with variations between physicians and departments (Dunn et al.,

2005; Huff, Morris, Kothari, Gibbs, & Emergency Medicine Seizure Study Group, 2001;

Reuber, Hattingh, & Goulding, 2000). In addition, the patient presenting with a possible

first seizure, and no prior history or treatment, presents a particular diagnostic challenge

(Pellegrino, 1994). An audit of 12 EDs in South Thames noted the poor documentation of

history and examination, and striking differences between departments in the number of

first seizure patients admitted to the hospital. Admissions ranged between 34.6 % and 91.7%

(Ryan, Nash, & Lyndon, 1998). A later UK audit of first seizures presenting to an ED found

that 83% of patients discharged with a letter to their GP were lost to follow up, compared to

only 20% of those referred directly to the neurology clinic (Bhatt, Matharu, Henderson, &

Greenwood, 2005). To promote continuity of care and ensure the best long-term outcome

for all seizure patients, suggested ED management includes evidence based guidelines for

systematic diagnostic evaluation, appropriate and thorough referrals, and timely provision

of information on issues such as driving (ACEP Clinical Policies Committee, 2004; Beghi et

al., 2006; Krumholz, Grufferman, Orr, & Stern, 1989; Reuber et al., 2000; Ryan et al., 1998;

Tiamkao et al., 2006; Wills & Stevens, 1994).

48


It is of interest to note that a recent UK study found that there is a relatively strong

relationship between the quality of epilepsy management in primary care and epilepsy

related emergency hospitalization (Shohet, Yelloly, Bingham, & Lyratzopoulos, 2007).

This suggests that quality primary care can lead to a minimization of epilepsy-related

hospitalization.

4.3.2 Medical services for epilepsy

Primary care practitioners are the key interface between patients and a health care service.

However, as the incidence of epilepsy is modest in comparison with many day-to -day

illnesses, it is unlikely that primary care practitioners will see a large number of cases each

year. Consequently, given the diversity of the condition, it is difficult for primary care

physicians to develop their skills in epilepsy care, especially in the area of diagnosis or

initial treatment (Brown et al., 1998). A study of GPs in Wales found that although three

quarters of those polled felt that long-term management was straightforward, less than

one quarter felt that initial management was straightforward, and thirty-four percent felt

their epilepsy knowledge was not adequate to deal with the day-to-day management of

epilepsy (Tharpar, Stott, Richens, & Kerr, 1998). In a Bristol study it was found that the

GPs contacted preferred to refer all new patients suspected of epilepsy to specialist services

(Lambert & Bird, 2001). In Spain also, a study of primary care physicians found that they

defined themselves as having scant knowledge of epilepsy and felt poorly qualified to treat

patients with the condition, resulting in frequent referrals to neurologists (Perez-Perez, Sosa,

& Gonzalez-Casanova, 2005).

In Australia, Frith, Harris and Beran (1994) polled 107 GPs in New South Wales and

found that 25% had not managed epilepsy before entering private practice, and only 26%

of the doctors regularly initiated treatment for seizures without first making a specialist

referral. This referral figure (approx. 74%) was higher than the figure of 56% identified in

a similar study published 11 years earlier (Beran & Read, 1983), showing a trend towards

increased specialist referral of first seizure patients. In the later study the authors found that

despite referring new-onset seizure patients for specialist assessment, GPs still considered

themselves to have a continuing role in the care of patients with epilepsy, expressing a

49


high level of satisfaction with care shared by a neurologist (Frith et al., 1994). Other health

professionals such as psychiatrists, psychologists and social workers were given very low

priority by the GPs and viewed with dissatisfaction because of “impractical or incorrect

advice,” “lack of feedback,” “stereotyping” or “lack of empathy” (Frith et al., 1994). In

later Australian research, Thom, Lee, Dhillon, Dunne, and Plant (2002), working in Western

Australia, found that the median number of epilepsy patients for each GP polled was six,

and 42% percent of the GPs sampled regarded their epilepsy knowledge as inadequate.

In the US, a study by Moore, McAuley, Mott, Reeves, and Bussa (2000) found that in a

sample of 504 primary care physicians approximately 25% did not refer the majority of their

seizure patients to a neurologist. This group tended to see more epilepsy patients and to feel

more knowledgeable about the condition. Nevertheless, in the overall sample, the physicians

were not likely to rate themselves as very comfortable with epilepsy. In regard to the issues

of women and epilepsy, a study of American healthcare professionals found it unlikely that

care practices for women with epilepsy were conforming to recommended standards e.g. in

relation to pregnancy and contraceptive advice. When questioned about practice parameters

for women and epilepsy, many respondents could not answer key questions. Neurologists

provided the highest number of correct responses, followed by endocrinologists,

obstetricians/gynaecologists, internal medicine physicians, family medicine physicians and

paediatricians (Morrell et al., 2000).

Continuing management which is primary care based, and closely integrated with specialist

epilepsy services, has been put forward by many in the UK as the ideal model of epilepsy

service provision (Rajpura & Sethi, 2004). However, such a model requires epilepsy

expertise at both levels of care as well as effective strategies for integrated management.

Malcolm Taylor, a UK general practitioner with a special interest in epilepsy has observed

that general practice can only provide a high standard of epilepsy care within a structure

offering good specialist services (Taylor, 1994), while Goodwin, Wade, Luke and Davies

(2002) noted that even where secondary care is high quality and available, successful epilepsy

care will also require well informed GPs and practice nurses. Some go so far as to suggest

the promotion of specialist GPs with additional skills in epilepsy (Brown et al., 1998).

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Analyzing neurology referral patterns in the US (using transient neurological events,

Parkinson’s disease and dementia) researchers assessed agreement between neurologist and

primary care physicians for the extent of speciality involvement in patient evaluation and

management (Swarztrauber & Vickrey, 2004). The authors found disagreement between the

two, a situation which should raise concerns among health care providers, policy makers, and

educators as to whether shared care in that setting is actually coordinated and appropriate.

A UK study found that few patients felt their care was shared between hospital and GP, and

epilepsy information was perceived to be poor (Poole et al., 2000). Where patients preferred

primary care, it was due to personal service from a GP who knew them, whereas, where

patients preferred secondary care it was due to the doctor’s expertise (Poole et al., 2000).

Criticisms of epilepsy services have been made in many parts of the world, irrespective of

the overall quality of local general health services (Dua et al., 2006; Levav, Stephenson,

& Theodore, 1999; Malmgren et al., 2003). Comments have been especially critical in

the UK. Sir Liam Donaldson noted in the Annual Report of the Chief Medical Office

(DH, 2001a) that from 1953 five major reports had made recommendations to improve

services for people with epilepsy but that services remained patchy and fragmented. He

added that people with epilepsy ‘…are at triple jeopardy: they suffer social stigma because

of their disease, understanding of the illness amongst health professionals is not high and

the problem is not addressed by health services with the same commitment as is given

to other chronic diseases…’ (DH, 2001a, p. 23). Consequently he stated that services for

people with epilepsy fall short of what might be expected in chronic disease management

(DH, 2001a). He acknowledged that up to 20% of patients may be misdiagnosed receiving

inappropriate and unnecessary treatment. He also noted the special management needs for

pregnant women with epilepsy (DH, 2001a). A UK audit of epilepsy care in 2006 observed

that haphazard follow up arrangements precluded ‘…the review of diagnostic accuracy,

estimation of remission rates, assessment of adherence to prescribed treatment and awareness

of level of patients’ knowledge especially women of childbearing age on teratogenic drugs’

(Minshall & Smith, 2006, p. 93). As recently as 2007 the UK All Party Parliamentary Group

on Epilepsy (APPGE) stated that ‘…even in this world of competing health interests, the

case for improving epilepsy services is overwhelming’ (APPGE, 2007, p. 4).

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4.3.3 Public health policy: political and social factors

When considering the reasons for inadequate epilepsy care Dr Malcolm Taylor (a leading

GP spokesperson on epilepsy) attributed the poor progress in the UK largely to the lack of

neurologists in that country (Taylor, 1994). Estimates published in 2007 suggested that the

number of UK neurologists needed to rise, at a minimum, from 436 to 781 by the year 2012

(APPGE, 2007). However, health services can also be compromised in both rich and poor

countries due to the influence of political and social factors (Shorvon, 1995b). For example,

in addition to the lack of neurologists, Taylor (1994) himself also noted the low priority given

to epilepsy by health planners as a factor inhibiting improved services. As recently as 2001

the chief medical officer of the UK suggested that, despite the advancement in the range of

treatments available, epilepsy has remained an unfashionable area of clinical practice which

has not attracted the same high profile or professional interest as other chronic diseases.

Like Taylor, he was of the opinion that service planners and policy-makers have not been

moved by the plight of people with epilepsy. He went so far as to describe this state of

affairs as a ‘…serious failure to act…’ underlining the ‘…ignorance and apathy towards the

needs of people with this common disorder’ (DH, 2001a, p. 23). The APPGE states that

a ‘…vicious circle of social stigma, secrecy and widespread medical ignorance has led to a

poor service, from which patients cannot confidently expect good treatment at primary or

secondary level’ (APPGE, 2007, p. 4).

Low priority in public health, as an obstacle to the improvement of epilepsy care, has also

been raised as an issue in the US (Epilepsy Foundation 2004). The ratio of neurologists to

patients is higher than the UK (Hooker et al., 2003; WHO, 2004a) but even so, the epilepsy

and public health communities have agreed that epilepsy care is deficient. In 2004, a report

from a national meeting of epilepsy experts noted a continuing lack of awareness regarding

the seriousness of epilepsy and available treatment options among people with epilepsy,

health care professionals, and the general public (Epilepsy Foundation, 2004). The report

also noted that, ‘Despite its impact on the individual and society, epilepsy remains a hidden

disorder, difficult to quantify and until recently, largely absent from the nation’s public

health agenda’ (Epilepsy Foundation, 2004, p. 6).

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Apart from a Plan for Nationwide Action on Epilepsy released in the 1970s (Austin, Carr,

& Hermann, 2006), it had not been until 1994 that the US Center for Disease Control and

Prevention (CDC) first convened a group of experts representing the epilepsy treatment

and advocacy communities, to shape a public health agenda for epilepsy (Coelho & Homes,

2006; Epilepsy Foundation, 2004). Three years later the CDC, with other interested

organizations, sponsored the first major public health conference on epilepsy. The

conference recommended that the goal of treatment should be ‘no seizures no side effects’

and the key message from the conference to the health care community was summarized

as ‘…take seizures seriously; do it early and do it right the first time; be systematic, efficient

and effective; and empower the patient’ (Epilepsy Foundation, 2004, p. 7). The CDC now

highlight the medical and social reasons why epilepsy should be considered as a public

health problem in the US (http://www.cdc.gov/epilepsy/).

In Australia, as in the US, the ratio of neurologist to patients is higher than the UK.

(Hooker et al., 2003; WHO, 2004a) However, it cannot be assumed that epilepsy services

will therefore be adequate to meet the needs of Australian patients, taking account of

the unique Australian environment and the distance to existing specialist care. Accurate

assessment is difficult, as there is no published data investigating the overall adequacy of

Australian epilepsy services or the resulting outcomes for epilepsy patients. One fact we do

know is that avoidable hospitalizations for convulsions and epilepsy generally increase with

remoteness (Page, Ambrose, Glover, & Hetzel, 2007).

Public health policy in Australia does not define best practice national frameworks for

epilepsy care. Initiatives such as First Seizure Clinics which focus specifically on new-onset

seizures have been instigated in most states, but these have been initiated by practitioners

working in the few key epilepsy centres of the capital cities rather than as part of national

health care policy. One hospital-based epilepsy policy and one state-based policy have been

identified (4.4.2.3). As for general practice, there is some data providing an overview of

epilepsy consultations which identifies epilepsy encounters as approximately 0.3% of GP

consultations (Charles, Ng, & Britt, 2005). However, there are no public health guidelines

for this setting.

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There are both generic and epilepsy specific influences affecting the social and political

aspects of public health. A report on epilepsy in Northern America concluded that poor

treatment access and health care disparities for people with epilepsy may be related to

insufficient economic resources, rural isolation, gender and ethnicity, as well as lack of

public and physician knowledge of modern approaches to epilepsy care (Theodore et al.,

2006). Australian studies have noted that indigenous Australians present more frequently to

hospital with neurological conditions than non-indigenous Australians (D’Souza, Jeffreys,

& Cook, 2007), and that they present with more serious disease (Archer & Bunby, 2006).

Reasons put forward include not only possible ethnic differences in prevalence (D’Souza

et al., 2007), but also inequitable health care utilization due to cultural or geographic issues

(Archer & Bunby, 2006). One positive response to geographical issues has been documented

in the Netherlands where extended mobile outpatient clinics have reduced admission

to epilepsy centres in those areas of service (De Boer, 1995). Meanwhile, in developing

countries, inadequate epilepsy services, result in an enormous treatment gap (Diop,

2005). The treatment gap is defined as the difference between the number of people with

active epilepsy and the number whose seizures are being appropriately treated in a given

population at a given point in time (Meinhardi, Scott, Reis, Sander, & ILAE Commission

on the Developing World, 2001). Assessment of the gap must take into consideration the

economic, social, political and cultural frameworks in which it exists (WHO, 2005a). Lack

of drug supply due to logistics or economy, poor community awareness, cultural beliefs,

stigma, government resources and the local infrastructure have all been identified as

problems (Dua et al., 2006).

4.3.4 Epilepsy as a chronic condition

Much of the world’s burden of disease is due to chronic disease (WHO, 2002) which, in

Australia, is estimated to be responsible for around 80% of the total burden of disease,

mental problems and injury, as measured by ‘disability-adjusted life years’ (National Health

Priority Action Council [NHPAC], 2006). During the 20th century chronic disease has

surpassed infectious disease and injuries as the dominant health problem. This is attributed

to a combination of improved medical services, an ageing population, and the adoption of

unhealthy lifestyles (NHPAC, 2006). Accounting for more than 70% of Australian health

54


care expenditure, chronic conditions have become the focus of efforts to improve their

prevention and management (NHPAC, 2006).

Although epilepsy has been described as a chronic condition by the UK chief medical

officer (DH, 2001a), and also by policy makers in the US (CDD, 2003), Australian health

care policies and activities in chronic health do not comprehensively include epilepsy. For

example, epilepsy is not mentioned in the National Chronic Disease Strategy (NHPAC,

2006), although it is discussed as a chronic health condition in a summary of child health

(Al-Yaman, Bryant, & Sargeant, 2002). Defining chronic conditions has been challenging

for policy makers (Australian Institute for Health and Welfare [AIHW], 2001) and an

Australian report suggests that at a minimum chronic conditions may be conceptualized

as ‘…conditions that are prolonged, do not often resolve spontaneously, and are rarely

cured completely’ (AIHW, 2001, p. 2). The report notes that chronic is usually defined

by a minimum duration for example ‘… disease lasting 3 to 6 months, consistently or

intermittently may be termed chronic’ (AIHW, 2001, p. 2). Although epilepsy is a condition

that varies markedly between individuals (chapter 2), in many cases the condition fits the

definitions given for chronicity. If epilepsy was included under the umbrella of chronic

conditions, people with epilepsy might be expected to benefit from the increased funding,

research and development of chronic condition management strategies now taking place.

Perhaps epilepsy is overlooked in the chronic disease discussions because it lacks a strong

or well defined link to commonly accepted lifestyle factors associated with chronic illness.

The identification of risk factors for chronic conditions has focussed particular attention on

conditions where risk related factors such as diet, exercise, and smoking can be targeted to

decrease the incidence of a condition, or enhance self-management (NHPAC, 2006).

It may be argued that epilepsy is a lower prevalence chronic condition, and this is the reason

for the lack of attention it receives in Australian public health activities. Nevertheless,

even at a lower prevalence, it is not an insignificant condition. A perusal of the 2001–2002

data for Australian avoidable hospitalizations, noted that ambulatory care-sensitive (ACS)

conditions, accounted for 8.7% (over 552,000) of all hospital admissions in Australia (Page

et al., 2007). Ambulatory care-sensitive conditions are classified as conditions for which

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hospitalization is considered potentially avoidable through preventative care and early

disease management (Page et al., 2007). For the years 2001–2002 the diagnostic category of

‘convulsions and epilepsy’ rated in the top ten ASC conditions for avoidable hospitalizations

with 5.6% (31,000; 160.4 per 100,000) of ACS admissions. This can be compared with

asthma at 7.4% and angina at 9% (Page et al., 2007). For the years 2001–2002, in age

groups 0–14 and 25–44, ‘convulsions and epilepsy’ was the fourth most common cause

of admission (263.4 per 100,000 and 136.6 per hundred thousand respectively). In males

however it was the most common cause of admission for the age group 15–24 (127.8 per

100,000), and the second most common cause for age group 25–44 (164.5 per 100,000)

(Page et al., 2007). The average number of days per patient for the same period (2001–

2002) was higher for ‘convulsions and epilepsy’ (2.92 average bed days) than for angina or

asthma (2.67 and 2.49 average bed days respectively) (Victorian Government Department

of Human Services, 2004). However, no government policy response has yet emerged to

address these figures. In the US, studies of hospitalizations for epilepsy estimate that many

could be prevented with effective outpatient management, focusing on proper diagnosis,

treatment and patient compliance (CDC, 1995).

When considering mortality figures in Australia it is interesting to note that in figures for

avoidable deaths in the state of Victoria between 1997 and 2003, amongst young people

between 15 and 29 years, epilepsy was consistently one of the top five causes of death

(Victorian Government Department of Human Services 2008). The other four causes were

all accident-related or due to self-inflicted injury, which is associated with mental health

conditions. However mental health conditions aside, epilepsy was the only other chronic

health condition to appear in the top five. The overall number of epilepsy deaths may not be

great, but nevertheless, such deaths are considered avoidable and yet little attention has been

given to epilepsy care in national health policies.

Epilepsy and other ‘lower’ prevalence chronic conditions (LPCCs) such as multiple sclerosis,

ALS (amyotrophic lateral sclerosis) and Parkinson’s Disease have raised questions for policy

makers as to how best to effectively integrate their management into the framework of

contemporary public health. Research in the US has investigated this issue, with epilepsy

56


as the case study in one project (CDD, 2003). Overall, findings have indicated uncertainty

by state health departments about their role in relation to LPCCs (CDD, 2003; Wheeler,

Anderson, Boddie-Willis, Price, & Kane, 2005). The studies have also identified reluctance

by funded public health agencies to take the lead in initiating new programs for LPCCs such

as epilepsy, when other priorities such as tackling risk factors associated with the leading

causes of death demand their greater attention. One solution which has been put forward

is the increased involvement of organizations that are not traditional partners in health

programs, such as community based support groups, with the goal of mobilizing resources

and expertise to collaborate with traditional health services and perhaps generate innovative

outcomes (CDD, 2003; Wheeler et al., 2005).

4.3.5 Raisingtheprofileofepilepsycare

It is interesting to note that prior to 2000, where successive UK government inquiries and

reports concerning epilepsy were presenting similar conclusions about the need for change,

provision of care was not substantially improving (APPGE, 2007). However a new wave

of lobbying by consumer groups began to achieve positive outcomes, such as the national

audit into epilepsy deaths (Hanna et al., 2002). The audit appears to have provoked a

sense of urgency for change with UK health policy makers at the national level. The audit

report presented quality quantitative data on epilepsy mortality highlighting the number

of deaths which might have been prevented with enhanced systems of care (Hanna et al.,

2002). The survey identified that approximately 1000 epilepsy related deaths occur in the

UK in a 12-month period. It also concluded that of the cases examined, 39% of the adult

deaths and 59% of child deaths would have been potentially or probably avoidable, if care

had been different (Hanna et al., 2002). The research data received a special mention by

the UK Chief Medical officer (DH, 2001a) and was followed by new initiatives in epilepsy

care. For example, The Medicines Partnership, established by the Department of Health in

2002 to promote the concept of concordance (prescribing and medicine taking based on

partnership), published a guide in 2004 for people with epilepsy (Medicines Partnership,

2004). In line with the recommendations of the report on epilepsy-related death, the guide

informs epilepsy patients that they should have a medical review once a year, and provides

information assisting patients to prepare for a review which results in effective management

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of their condition. Other significant initiatives in the UK following the audit were two

National Service Frameworks (4.4.2.1a), and two clinical guidelines for managing epilepsy,

which were not only released but also well publicized (SIGN, 2003; Stokes et al., 2004).

In the US, as in the UK, the pro-active role of community support agencies has also been

a contributing factor in the development of national policy initiatives for epilepsy care, and

the Epilepsy Foundation collaborates with the CDC in emerging strategies (http://www.cdc.

gov/epilepsy/).

In Australia, consumer groups do not appear to have had the same visible impact on

national policies. A report on epilepsy and human rights was published with support

from the National Epilepsy Association of Australia 24 years ago (Sheehan, 1985) but few

conspicuous achievements have been made since.

4.4 Guidance for epilepsy care

4.4.1 Evidence for guidelines

The development of guidelines for health care services is generally based on a critical

appraisal of scientific evidence (Woolf, Grol, Hutchinson, Eccles, & Grimshaw, 1999).

However, appropriate data may not always be available. For example, a literature review

which asked: ‘Based on the available evidence, which is the ideal service provision for

epilepsy?’ found few papers with robust quantitative methodologies (Rajpura & Sethi, 2004).

Most of the items retrieved by the search were review articles, consensus statements and

descriptive or observational studies. Grey literature searches (which include unpublished

material or non-commercial publications) led the authors to reports of expert committees

and associations. They noted that much of the evidence was of a lower grade and that more

research was needed to determine the most clinically effective model of service provision.

Nevertheless they indicated that the direction of the evidence obtained from several

sources suggested similar standards for an epilepsy service and, despite the lack of evidence,

improvements were urgently needed (Rajpura & Sethi, 2004).

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Wallace, Shorvon, and Hopkins (1997) surveyed neurologists to carry out a comparison of the

level of service offered by epilepsy and general neurology clinics. They found that epilepsy

clinics had advantages for patients by improving access to investigations, specialists and

support services, and that the number of epilepsy clinics in the UK had grown over two years

from 21 (Taylor, 1994) to more than 54. However, they noted that the extent to which these

translated into positive health outcomes needed further evaluation (Wallace et al., 1997).

Findings with a different emphasis were put forward by Meads, Burls, and Bradley (2002)

who specifically examined the evidence on the relative effectiveness and cost-effectiveness

of specialist epilepsy clinics compared to general neurology outpatient clinics, and the

evidence on the relative effectiveness and cost-effectiveness of specialist epilepsy nurses

in inpatient, outpatient, or GP care, compared to ‘usual care’ without a specialist epilepsy

nurse. They could not find reliable evidence that one model of care was superior to the

other in terms of patient outcomes. However, because there were some positive features

noted in the programs where care was supplied by nurses (lower costs and patient

satisfaction), the authors felt that given the urgent need for change in service provision in

the UK, that model should be considered, at least as an interim measure.

In the US the CDC initiated a systematic literature review, carried out by the Agency

for Healthcare Research and Quality, to investigate interventions in patients with newly

diagnosed epilepsy (Ross et al., 2004). Using agreed selection criteria the authors finally

selected only 120 studies. The evidence suggested that access to clinical expertise could

minimize misdiagnosis and delay in diagnosis. The authors also noted that access to clinical

expertise could improve the choice and timing of initial antiepileptic drug monotherapy.

When considering the social services, counselling and information that are necessary for

patients with newly diagnosed epilepsy, the authors found there was no suitable published

evidence which met the criteria for review to address these areas (Ross et al., 2004).

Although there appears to be little good evidence on the effectiveness of epilepsy services

themselves, there has been quality data published to inform medical treatment of the

condition, for example; the risk of seizure recurrence after a first seizure (Berg & Shinnar,

1991), the risk of relapse following discontinuation of AEDs (Berg & Shinnar, 1994), the

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relationship between treatment and prognosis (Marson et al., 2005), and the links between

seizure frequency, treatment, and death (Hanna, 2002), to mention just a few. Where

guideline development for epilepsy services has taken place in recent years, it may reflect the

urgent desire of practitioners and others to bring patients the best of what is known in actual

treatment as quickly and effectively as possible as they see it rather than a development of

service provision on the basis of proven outcomes.

4.4.2 The content of guidelines

4.4.2.1 UK guidelines

The delivery of epilepsy services in the UK is influenced by both National Service

Frameworks (NSF) and clinical guidelines. A NSF is a long term strategy for improving

specific areas of care with measurable goals set within time frames. Epilepsy is connected to

the NSF for long term (neurological) conditions published in 2005 (DH, 2005a).

Clinical guidelines are defined as ‘…systematically developed statements to assist practitioner

and patient decisions about appropriate healthcare for specific clinical circumstances’

(Field & Lohr, cited in Woolf et al., 1999, p. 527). The two key epilepsy clinical guidelines

published in the UK in recent years were developed at much the same time (SIGN, 2003;

Stokes et al., 2004). Therefore, to avoid the risk of two national groups making conflicting

recommendations, it was agreed that the two development teams would share relevant

searches and evidence reviews but could each make their own guidelines as required by their

respective methodologies (Stokes et al., 2004).

4.4.2.1a National Service Frameworks

The NSFs are overarching policy documents in the UK aimed to raise standards of

treatment, care and support across health and social care services by defining quality

requirements. Key themes in the NSF for long term neurological conditions are

independent living, care planning around the individual, timely access to services and joint

working across agencies (DH, 2005a). The NSFs promote information and support, case

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management and self-care. Neither NSF is epilepsy specific and although the overall goals,

if they are implemented, should contribute to enhanced epilepsy care, questions have been

asked about the likelihood of success. Lack of funding, a ten-year implementation period,

and poor assessment to date, were all matters of concern noted in the recent report of the

UK APPGE in 2007.

4.4.2.1b Scottish Intercollegiate Guidelines Network

The Scottish Intercollegiate Guidelines Network (SIGN) exists to develop and disseminate

national clinical guidelines (www.sign.ac.uk/). In 2003 SIGN published a guideline

on the diagnosis and management of epilepsy in adults. The guideline provides broad

recommendations on initial AED treatment and the management of drug-resistant epilepsy,

status epilepticus, provoked seizures, and people with both epilepsy and learning difficulty

(SIGN, 2003). The guideline also makes recommendations relating to ‘…contraception,

pregnancy and the menopause; models of care for epilepsy; audit of epilepsy care and

provision of information for patients and carers’ (SIGN, 2003). The guideline promotes

a structured management system for epilepsy in primary care with an annual review.

Criteria proposed for shared care management include the referral of new patients for

confirmation of diagnosis, the monitoring of seizures aiming for improved control through

medication change or re-referral to specialist care, the minimization of adverse drug effects,

facilitated withdrawal from medication where indicated, increased attention to quality of

life issues, women’s issues and the needs of patients with learning difficulties. Specific

recommendations regarding the delivery of the service are:

Services should be provided in acute hospitals … to enable probably recent-onset seizures to be seen within two weeks of onset. Hospitals should provide services to review people with drug resistant epilepsy. Subspecialty epilepsy clinics should also be available to meet the needs of specific groups of patients (epilepsy in learning disability, in pregnancy, in adolescence and in potential surgical candidates). Each epilepsy team should include one nurse specialist. (SIGN, 2003, p. 29)

It is of interest to note that following the release an earlier version of the Scottish guidelines

in 1997, a study was carried out to investigate the effectiveness of dissemination and

implementation strategies for the guideline (Davis et al., 2004; Stephen & Brodie, 2004).

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The results showed that none of the intervention strategies led to improvements in patient

quality of life or quality of epilepsy care. Later research by Williams et al. (2007) looked

at reasons for the failure of the guidelines to effect change. The authors concluded that

guidelines of themselves do not inherently trigger changes in GP roles or behaviour. They

suggested that the implementation of the guidelines was affected by complex personal

and contextual factors related to practice, and that the introduction of the guideline had

been based on theory and relevant literature available at the time but not on a site-specific

assessment of epilepsy in primary care (Williams et al., 2007). Stephen and Brodie (2004)

recommend that a focussed plan for the implementation and, robust assessment of impact,

are essential accompaniments to the dissemination of epilepsy guidelines.

4.4.2.1c National Institute for Health and Clinical Excellence

The National Institute for Health and Clinical Excellence (NICE) is responsible for

providing national guidance on promoting good health and preventing and treating ill

health (www.nice.org.uk/). In 2004 it published The Epilepsies: The diagnosis and management of

the epilepsies in adults and children in primary and secondary care (Stokes et al., 2004). In the preface

to the full guideline, it was noted that service provision for people with epilepsy had been

patchy and sometimes poor in both primary and secondary care. It also stated that if there

was successful implementation of the guideline recommendations, there would be a great

improvement in the care of people with epilepsy (Stokes et al., 2004). The guideline is

defined as a systematically developed statement to help both practitioner and patient decision

making about appropriate healthcare in epilepsy. Several principles underlie the development

of the guideline, including the requirements that it be based on published evidence and that

it take full account of the perspective of the person with epilepsy and their family or carers

(Stokes et al., 2004). The document stresses that because social services, educational services

and the voluntary sector have an important role to play in the care of people with epilepsy,

the guideline is highly relevant to such agencies (Stokes et al., 2004). Although NICE is

primarily concerned with the National Health Service in England and Wales (NHS) and

therefore not able to make recommendations for practice outside the NHS, the guideline

draws on international evidence and, as with the SIGN guideline, may provide useful

leadership for other health services seeking to construct principles of service delivery.

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The key priorities for implementation by NICE are similar to the SIGN recommendations.

They include early and accurate diagnosis by a specialist, comprehensive care designed to

suit individual needs, regular reviews with re-referral to a specialist if necessary, special

consideration for the issues of women with epilepsy, the provision of written and visual

information and counselling services (Stokes et al., 2004). As with the SIGN guidelines the

NICE recommendations were well received but there is fear that non-implementation may

become an issue (APPGE, 2007).

4.4.2.2 American guidelines

Looking back at early epilepsy guidelines in the US provides an interesting insight into the

changes which have taken place in the approach to epilepsy management. For example,

guidelines produced in 1978 by the US Department of Health Education and Welfare

stated that primary care physicians could care for 75% of their epilepsy patients, with only

25% needing specialist care (Moore et al., 2000). Although the most recent guidelines for

specialized epilepsy centres agree that new-onset seizures, in some cases, may be treated

satisfactorily by a primary care provider or general neurologist, the authors (Gumnit &

Walczak, 2001), note evidence suggesting that expert evaluation shortly after the onset of

epileptic seizures improves outcome (Ross et al., 2004). Therefore Gumnit and Walczak

(2001) recommend that referral ‘… to specialized epilepsy centres if locally available should

therefore be considered shortly after seizure onset even if local practitioners are reasonable

secure that the diagnosis of epilepsy is correct’ (Gumnit & Walczak, 2001, p. 813). In a

country with a different health care structure to the UK, the document hints at the fact that

the timing of referrals may vary depending on the care setting, which could account for the

ambivalence which seems to be present in the recommendations. This is in contrast to the

very clear recommendations of UK guidelines for the early assessment of all new cases, not

just by a general neurologist but by an epilepsy specialist, in as little as two weeks if possible

(Stokes et al., 2004).

One further document of note, although not a formal legal policy or formal practice

guideline, is a guide from the George Washington University Medical Centre putting

forward a comprehensive overview of what is considered to be good practice for epilepsy

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care, in the opinion of a diverse panel of experts (http://www.gwumc.edu/sphhs/

departments/healthpolicy/chsrp/newsps/epilepsy/). Managing Epilepsy Care is a guide

to optional purchasing specifications for services related to epilepsy (Crowley, 2003). The

broad menu of draft provisions relating to the medical management of epilepsy are optional

for state policy makers, and are designed as a tool to assist managed care purchasers in

identifying key epilepsy-related issues as they draft and negotiate purchasing agreements

with managed care organizations. The guide is intended to assist people with epilepsy,

epilepsy advocates, policy makers, and managed care program administrators. There are

three key aims: to increase understanding of the health care needs of people with epilepsy,

to facilitate consumer participation in the development of Medicaid managed care contracts

and, to explain the meaning and rationale for specific provisions of the Epilepsy Purchasing

Specifications. The document puts forward the recommended standard for medical

management summarized as: Three Months: No Seizures, No Side-Effects. This standard is

expanded as follows:

The specifications establish a standard that calls for re-evaluation and, as necessary, revisions to the treatment plan for any individual who is still experiencing seizure or side-effects within three months of the implementation of the treatment plan. The process of re-evaluation and revision should continue until no seizures or treatment-related side effects are experienced for a three-month period or the patient is referred to a more specialized level of care (Crowley, 2003, p. 21).

4.4.2.3 Australian guidelines

An Australian report entitled Guidelines for Comprehensive Epilepsy Centres was published

in 1991. (Australian Health Ministers’ Advisory Council. Superspecialty Services

Subcommittee, 1991). The report noted that there had been rise in interest in epileptology,

particularly epilepsy surgery, and guidelines were put forward for the development of

several comprehensive epilepsy centres around the country. The report suggested that

initial assessment of patients with epilepsy, and the management of non-refractory

epilepsy patients, should remain with general practitioners. A review of the diagnosis at a

comprehensive epilepsy centre was recommended only for cases considered as refractory.

Refractory was taken to mean ‘…multiple seizures per month despite adequate trialling of a

variety of anti-convulsant drugs over at least a two year period’ (Australian Health Ministers’

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Advisory Council. Superspecialty Services Subcommittee, 1991). Seventeen years on this

report no longer reflects contemporary attitudes to the management of epilepsy where the

emphasis is now on striving for early and complete seizure control in all cases (4.4.2.1b &

4.4.2.1c). However, no updated guidelines have been released and a search of the Epilepsy

Society of Australia’s website provides links only to the SIGN (4.4.2.1b) and NICE (4.4.2.1c)

UK guidelines (www.epilepsy.society.org.au/pages/index.phhp). One new state-based

document outlining a framework for epilepsy care has recently appeared: the WA Services

Model of Care (Epilepsy Review Committee, Neurosciences & the Senses Health Network,

2008). This document also looks to the SIGN (4.4.2.1b) and NICE (4.4.2.1c) guidelines.

While guidelines can provide a catalyst for improvements in health care, their absence does

not necessarily prevent the ongoing opportunistic development of innovative strategies.

The number of Australian comprehensive epilepsy centres has increased and they continue

to provide care for patients with refractory epilepsy. In addition, new frameworks of care

are also appearing in some centres, through the initiative of physicians. First Seizure

Clinics for example, with the focus on new-onset seizures and a protocol to facilitate rapid

referral and investigation are gradually becoming available in some cities (www.brain.org.

au/epilepsyresearch/researchprograms/firstseizures.index.html). One Melbourne hospital

has also developed an internal guideline for the management of epilepsy throughout that

institution (Department of Neurology & Clinical Epidemiology and Health Services

Evaluation Unit, Melbourne Health, 2002), a process funded by the Victorian Government

Department of Human Services. However, this appears to be the only such guideline in

the country. As well as defining the appropriate clinical management for the patient within

the hospital, the guideline includes a recommendation to provide patients with information

about epilepsy agencies which provide patient support services.

4.4.2.4 Emphasis on psychosocial and social care

Epilepsy care guidelines, as with health services generally, reflect a changing attitude to

patient care. A greater consideration of the psychological and social needs of patients is a

shift of emphasis from the traditional medical focus of care, where doctors treat disorders

and diseases according to positive and negative outcomes which they have been taught to

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measure (Devinsky, 1993). In epilepsy for example, the outcomes of interest to the doctor

have usually been seizure frequency, seizure severity, and medication side effects (Devinsky,

1993). However, as health has been increasingly defined more broadly to encompass not only

physical but also pyschosocial well-being, additional outcomes for consideration include how

the patient feels, functions and perceives life (Cramer, 1999; Devinksy, 1993; Kramer, 2003).

The SIGN guidelines recommends a model of care that will seek to introduce non-clinical

interventions, and disseminate information to help improve quality of life for patients with

epilepsy (SIGN, 2003). It suggests that each epilepsy team should include an epilepsy nurse

specialist and notes what is considered to be essential information (SIGN, 2003). The NICE

guidelines endorses similar strategies, emphasizing that it is crucial to provide appropriate

information and support for people with epilepsy, their family and carers at each stage of the

care pathway (Stokes et al., 2004).

4.5 Summary

The provision of epilepsy care throughout the world is less than optimal. There appears to

be a general lack of knowledge amongst health professionals as to how best to treat seizures

and epilepsy, although research is pointing the way to improvements in clinical management

and this information is being utilized by physicians with specialist knowledge. The value

of the epilepsy specialist is increasingly being recognized by physicians generally. However,

the integration of care between the primary and tertiary levels often remains inconsistent.

As emerging clinical data changes the concept of best practice, physician roles appear

confused. At the same time, health policies have been inadequate to guide and support the

adoption of effective care frameworks for patients who experience seizures and epilepsy. As

a lower prevalence condition, epilepsy has needed the strong push of consumer advocacy

to attract the attention of policy makers and funding bodies. There has been some success

in the UK and US but little in Australia. Where guidelines have begun to emerge, a lack

evidence on which to base recommendations and a lack of resources have retarded their

development and introduction. It is still too early to assess their overall impact on patient

health outcomes.

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Where guidelines do exist, they place significance on the provision of patient support

through information and counselling. These areas have lagged behind clinical management

and, for patients with epilepsy although there is much evidence of need, there is little

research to guide future best practice development. Patients seek information from a

variety of sources and further data is required to determine which are the most effective

avenues through which to support epilepsy patients in their self-management practices.

The establishment of First Seizure Clinics represents an innovative response to the need

for enhanced epilepsy care. By studying the psychosocial outcomes of patients referred to

such a clinic this research project can contribute to a holistic evaluation of this management

strategy. The First Seizure Clinic also includes a patient information and support program.

In Chapter 5 the need for such a service and possible models are considered.

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Chapter 5

Information and support for epilepsy patients

5.1 Introduction

The emerging guidelines for epilepsy care emphasize the need for provision of patient

information and support. Chapter 5 explores this issue, beginning with a brief reflection

on the development of this philosophy in health care generally (5.2). The evidence of need

in the field of epilepsy (5.3), and the potential sources for the provision of such services are

examined (5.4), followed by a summary of chapter 5 and a preview of chapter 6 (5.5).

5.2 The development of health information and support services

The contemporary patient-centred approach in Western medicine has evolved from the

traditional biomedical model with its somewhat paternalistic doctor-patient relationships

(Leong & Euller- Ziegler, 2004). The shift in emphasis can be seen as a reflection of

changing political and moral values (Kaba & Sooriakumaran, 2007). Along with this altered

style of medicine, which promotes patient participation in decision making, has come a

need for patients to be well informed. As a result the consumer demand for information is

rising, and its provision has become an important goal for medical services (Coulter 1997;

Kaba & Sooriakumuran, 2007; Leong & Euller-Ziegler, 2004). Consequently, health service

guidelines increasingly state the need to facilitate the delivery of information and support.

While the word ‘information’ is somewhat self-explanatory, ‘support’ is a vague term and not

always defined in policy. However, it is often recommended hand-in-hand with information

(SIGN 2003, Stokes et al., 2004) suggesting that support is considered to be associated with

the information process, possibly involving the interpretation of information to address the

needs of patients on an individual basis. This might include emotional support, listening

and giving feedback, encouragement and motivation. Nevertheless, there are also broader

conceptualizations which can be applied to the term ‘support’, including advocacy and

various forms of material support. Each support service can be a unique blend. Therefore,

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for the purpose of this thesis, unless the details of a particular program are provided, the

term ‘support’ is taken generally to mean a service which is patient-centred and aiming to

address individual needs as targeted by that program.

Along with the growth in information services has come greater consideration of the

relationship between information provision and the psychology of health behaviour, with

theoretical constructs continuing to evolve (Newman, Steed, & Mulligan, 2004; Nicassio

& Meyerowitz, 2004). For chronic health conditions the overarching concept of patient

self-management is a key health promotion strategy to emerge from this background of

philosophical change and investigation of health behaviour. The concept of self management

has been explained as an approach which involves the person with the chronic condition

‘…engaging in activities that protect and promote health, monitoring and managing

symptoms and signs of illness, managing the impacts of illness on functioning, emotions

and interpersonal relationships and adhering to treatment regimes’ (Gruman & Von Korff,

1996, p. 1). Interventions to facilitate self-management are varied and the evidence base is

limited, but the expectation is that self-management support programs will reduce costly

heath crises, such as visits to the Emergency Department, and improve outcomes for

chronically ill patients (Pearson, Mattke, Shaw, & Wiseman, 2007). Leading researchers in

this field suggest that programs which include the teaching of decision making skills are

more effective in improving clinical outcomes than information–only patient education

(Bodenheimer, Lorig, Holman, & Grumbach, 2002). The self-management principles have

been embraced by policy makers, with the philosophy now influencing government health

policies internationally (DH, 2005b; Jordan & Osborne, 2007).

5.3 The need for epilepsy information and support services

The epilepsy community has discussed for many years the potential positive effects of

patient information and support. Thirty years ago the Commission for the Control of

Epilepsy and its Consequences suggested that patient knowledge was linked to coping with

epilepsy (Baker et al., 1999). Those concerned about treatment non-compliance, which

affects 25% or more of patients (Balzac, 2006; Wagner, Murad, & Patel, 2002), suggested

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that informed patients would be more compliant (Jarvie, Espie, & Brodie, 1993). Evidence

for this opinion was offered by WHO (2003) in a review of adherence to long-term drug

therapies. Education about the diagnosis and management of epilepsy was found to improve

the recruitment of patients into treatment programs and to improve drug adherence, or

markedly reduce nonadherence (WHO, 2003). The improvement of clinical outcomes has

also been put forward as an expected result if information and support services are provided

for patients. It is argued that well-informed patients, confident in their diagnosis and

treatment, adopt better self-management techniques (Buck et al., 1997). From the consumer’s

perspective, patients themselves have for many years, maintained community groups to offer

information and support (http://www.ibe-epilepsy.org/links ). Nevertheless, confirming

evidence or demonstrated success of such strategies in epilepsy remains limited and research

underlines the fact that the provision of information and support needs to be appropriate or

it may be ineffective (Balzac, 2006). The ongoing lack of such services is a consistent theme

in the published literature (Prinjha, Chapple, Herxheimer, & McPherson, 2005).

A systematic overview of the information and counselling needs of people with epilepsy

published by Couldridge, Kendall, and March (2001) concluded that these needs were largely

unmet over the preceding ten years despite various recommendations. Epilepsy patients have

often been found to have low levels of knowledge about their condition and feel that they

have not been well informed by those who treat them. For example, a study of 90 patients

under the care of neurologists found that fewer than half the patients reported having

been given enough advice on epilepsy (Ridsdale, Kwan, & Cryer, 2000). Jain, Patterson,

and Morrow (1993) surveyed 493 patients attending neurologists and found that only two

thirds felt they had been told what epilepsy was. Many had not been given any explanations

or did not understand what they had been told. Over 90% wanted more information about

epilepsy, its causes, education, employment, social security payments and leisure activities.

Only 20% felt that enough information was supplied about medication side effects. Little

information had been provided about safety issues. Goldstein, Minchin, Stubbs and Fenwick

(1997) surveyed patients at a specialist centre and found that although they knew some

general epilepsy facts, they were not well informed about their own condition or medication.

An American study by Long, Reeves, Moore, Roach and Pickering (2000) questioned

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175 patients at an Ohio comprehensive medical program. They were not found to be

knowledgeable about the disorder regardless of age, educational background or number

of years with epilepsy. Twenty-five percent of patients incorrectly thought that pregnant

women with epilepsy should discontinue their AEDs. During a routine audit of care for

women attending an obstetric-epilepsy clinic in England over half of the women attending

were found not to have received pre-conception counselling prior to attending the clinic.

Only 32% had been advised to take folate supplements (Foley, Oates, Mack, & Fox, 2000),

a strategy recommended (Montouris, 2007; Wilson et al., 2007) because the risk of neural

tube defects in the foetus is significantly higher for women with epilepsy than the general

population (Owen, Halliday, & Stone, 2000).

In Australia, Hayden, Penna, and Buchanan (1992) evaluated the responses of 517 people

recruited through an epilepsy organization or neurologists, noting that 26% did not

know what sort of epilepsy they had and many used terminology that indicated limited

understanding. Potentially unwarranted concern was expressed by 36% about passing their

epilepsy on to their offspring and only a small number of women were aware that they

could breastfeed while taking AED therapy. A study of South Australian patients attending

an epilepsy service found that 41.5% of 200 people surveyed did not know what sort of

epilepsy they had (Averis, 1996) while in Victoria, a study by Unsworth (1999) found that in

a sample of 82 people under the care of a neurologist, one third did not know. In Unsworth’s

sample, nearly half the respondents reported they had experienced a seizure-related injury

yet there was limited knowledge of seizure-related injury minimization strategies amongst

respondents. A large percentage of the group did not demonstrate a satisfactory knowledge

of current driving restrictions for people with epilepsy.

The information needs of those who support and care for people living with seizures are

also significant, and research has shown that carers themselves perceive barriers to having

their information needs met, for example, being unrecognized in relation to the person with

the seizure condition (Kendall, Thompson, & Couldridge, 2004).

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5.4 Sources of epilepsy information and support

The possible sources of information and support for epilepsy patients, as for any patient,

are varied, and little has been published to provide an overview of where or how epilepsy

patients are most likely to satisfy their requirements for such resources. Insight into this

issue has to be based on a combination of generic findings about health information seeking

generally, and the limited epilepsy specific findings. Data published by the Center for

Studying Health System Change (HSC), taken from a survey in 2001, showed that in the

US 38% of the population sought information from a person other than their doctor in the

previous year (Tu & Hargraves, 2003). In that study, education was shown to be the most

important personal characteristic to affect whether people are likely to seek information.

Other factors found to moderately increase information seeking were female gender,

younger age and higher income (Tu & Hargraves, 2003). A study where a child had epilepsy

found that families accessed a mean of 3.5 sources from, or recommended by, the clinic or

family doctor, and a mean of 4.1 sources outside these areas (Lu, Wirell, & Blackman, 2005).

Higher education levels were associated with more extensive searching, as was intractable

epilepsy. Perceived accuracy was highest for clinic-generated sources. External to the clinic,

internet sites, family members in the medical profession, and lay organizations, were those

with the greatest perceived accuracy. Friends within the medical profession, other families,

and health care providers were also highly ranked (Lu et al., 2005).

The following section (5.4) now examines the possible sources of information and support

for people with seizures and epilepsy, and considers the positive and negative aspects of

available options.

5.4.1 Health professionals

5.4.1.1 Doctor

When a patient with seizures consults a doctor a certain amount of information will

be provided to the patient, and perhaps family members. The quantity and style of the

information provided will vary due to the influence of numerous factors, including the

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setting, the condition of the patient, the time or resources available, and the attitude,

interpersonal skills, and training of the doctor. The unique aspect of each doctor/patient

encounter has been underlined in a study of paediatric neurologists which investigated the

giving of an epilepsy diagnosis. The study found a general lack of consensus on how this

should be done. The authors commented that approaches to disclosing the diagnosis were

largely determined by intuition (Cunningham, Newton, Appleton, Hosking, & McKinlay,

2002). While lack of standardization may appear haphazard, variation between patients,

especially when receiving a new diagnosis, does nevertheless entail a necessity to find a

balance that also retains some individualization of the process (Noeker, 2004).

Where doctors acknowledge a need for their epilepsy patients to receive additional

information and support, even if they were willing and able to alter the style of their

practice in some ways, it may not be realistic to expect them to allocate time to providing

these services. In any case they may not be the best people to carry out this role. Some

studies have suggested that patients prefer to gain additional support from other workers.

Jain et al. (1993) found that 61% of people wanted to talk to someone at the epilepsy clinic

other than a doctor. Ridsdale et al. (2000) found that in a study of patients with newly

diagnosed epilepsy, the nurse was rated highly for providing clear explanations compared

with the doctor. Such findings do not necessarily mean however that patients do not value

information from their doctors. Bearing in mind that study results vary depending on the

questioning used, a study by the HSC suggested that doctors are frequently regarded as the

primary source of information (Tu & Hargraves, 2003). The Pew Internet and American

Life Project study found a high percentage of patients seeking additional information but

noted that many patients still chose to discuss this with their doctor, using the doctor’s

advice as the ultimate decision making factor (Fox & Fallows, 2003). The HSC study

found that of those who sought information and visited their doctor 24% mentioned the

information to their doctor. Sharing of information was increased in those with higher

education levels and multiple chronic conditions (Tu & Hargraves, 2003).

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5.4.1.2 Nurse

The role of the nurse in the management of chronic conditions has been demonstrated in

conditions such as diabetes (Ridsdale, Robins, Cryer, & Williams, 1997). They can act as

providers of patient support, community education, and coordination of care. A similar role

for epilepsy nurses has been promoted, especially in the UK. However, when evaluating the

role of an epilepsy nurse, Mills, Bachmann, Campbell, Hine and McGowan (1999) found

that although the patients in the study were provided with greater access to information

there was no evidence of any improvement in health status. An interesting observation in

the two year follow up of this study was that consultation with the epilepsy nurse actually

appeared to have an adverse effect on patients’ perception of the effects of epilepsy on

aspects of everyday life. The authors speculated that contact with an epilepsy specialist nurse

might have underlined the label of epilepsy and heightened awareness of the restricting

effects (Mills et al., 1999).

Leonie Ridsdale (2000) reviewed the evidence from studies in primary care published

between 1992–1999. She found evidence that where nurses were trained in epilepsy care it

was feasible for them to set up and run clinics in family practices which were acceptable

and satisfactory to patients. She also found that there was an increase in the information

and advice recorded. However, she found there was little evidence on outcome as opposed

to process measures. In newly diagnosed epilepsy Ridsdale et al. (2000) tested the effect of

an epilepsy nurse specialist on patients’ knowledge of epilepsy, satisfaction with the advice

provided, and psychological well-being. They found an increase in patient reports that

enough advice had been provided, but the intervention appeared to help those with the

least knowledge to begin with and there was no statistical difference between the groups for

anxiety and depression. In newly diagnosed people, a qualitative review found that the nurse

intervention was valued by most patients in the situation (Ridsdale, Kwan, & Morgan, 2003).

Definitions of the epilepsy nurse roles and methodological deficiencies have hampered

research on this issue with Cochrane reviews concluding that randomized controlled trials

are scarce, and that evidence proving people with epilepsy benefit from specialist nurse

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interventions is limited (Bradley & Lindsay, 2001, 2008). An RCT published by Helde,

Bovim, Brathen, and Brodtkorb (2005) designed to evaluate the effect of a structured,

nurse-led program on quality of life in patients with uncontrolled epilepsy found that in

eighteen QOL items the intervention group showed significant improvement in four, and

the control group showed improvement in one. Although the intervention group showed

a significant improvement in its overall QOL score, the change from baseline to the two-

year follow up did not differ significantly between the two groups. It was of interest to note

that when asked about overall satisfaction with the clinic follow up using a visual analogue

scale, a highly significant difference was seen between the two groups (C = 72.0 ± 27.9; I =

95.1 ± 8.7) with higher scores for the intervention group. However, there was no correlation

between the reported general satisfaction and the change in QOL (Helde et al., 2005).

This project also included structured group education. Nonetheless, when discussing the

results the authors, while acknowledging that peer interaction is appreciated by patients,

emphasized that they believe a strong factual knowledge about the condition of epilepsy

should be provided by professionals (Helde et al., 2005)

Despite the limited research data, those bodies responsible for drafting guidelines such as

SIGN and NICE have felt the evidence was strong enough to support recommendations

for greater inclusion of the epilepsy nurse specialist in epilepsy care protocols. The NICE

guideline states that epilepsy specialist nurses (ESNs) should be an integral part of the

network of care of individuals with epilepsy (Stokes et al., 2004). The guideline document

also notes that there has been a great increase in the number of epilepsy nurses in the UK.

Foley et al. (2000) quoted a figure of 90 in 2000 and recent publications put the figure at 152

(APPGE, 2007). The SIGN guideline also emphasizes the importance of ESNs stating that

each epilepsy team should include epilepsy nurse specialists (SIGN, 2003). In Australia the

number of epilepsy nurses is small and the literature does not yet provide adequate data by

which to evaluate their impact on epilepsy services or patient outcomes.

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5.4.1.3 Psychologist

The impact of epilepsy on individuals can be wide ranging, affecting social and emotional

adjustment, cognition, memory and employment. It would seem that psychology would

have much to offer, not only in the area of neuropsychology and scientific assessment of

brain function, but also in the areas of cognitive-behavioural psychosocial interventions

aimed at the reduction and prevention of psychosocial comorbidity (Wagner & Smith,

2007). Psychologists are active in epilepsy specific programs, and much of the psychology

knowledge base comes from the observation of the relationship between brain and

behaviour in epilepsy. Nevertheless, the participation of psychologists in epilepsy

management (apart from the area of neuropsychology) has been observed to be somewhat

limited (Novelly, 1992). Some years ago McLin (1992) commented on this issue on behalf

of the Epilepsy Foundation of America, noting that the potential for psychology to develop

meaningful treatment, intervention, and prevention programs for children and adults with

epilepsy, needed to be ‘recognized, nurtured, and supported’ while recognising that this

potential had been overlooked. More recently similar concerns were voiced by Wagner and

Smith (2007) when they noted that, aside from neuropsychology, psychologists have played

a minimal role in clinical and research endeavours in paediatric epilepsy. Goldstein (2000)

outlined the potential for clinical psychology to enhance the quality of life in epilepsy

patients, but she too noted gaps in the epilepsy-related activities of psychology, with less

information pertaining to the effectiveness of psychological interventions, including group

therapy, in the field of epilepsy than for other conditions.

5.4.1.4 EEG technician

Almost every person with a suspected new-onset seizure will have an EEG. The corollary

of this is that neurophysiologists will see many patients with epilepsy. Although this is

possibly the only time the patient will see the particular technician, some time is spent

with that person on a one-to-one basis. The visit is also likely to take place early in the

diagnostic phase and possibly prior to a specialist consultation, at a time when there is still

uncertainty about the outcome. This would appear to be an important time for an exchange

of information. However no research addressing this setting could be found.

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5.4.1.5 Pharmacist

Approximately 60% to 70% of patients have their seizures controlled by medication (Kwan

& Brodie, 2000), so contact with a pharmacy will be a regular occurrence for patients taking

AEDs. In any case, an Australian study shows that approximately 90% of the population

visit a pharmacy in one year (Sunderland, Burrows, Joyce, McManus, & Maycock, 2006)

and research suggests that people perceive pharmacists to be highly reliable advisors

on personal health matters (Benrimoj & Frommer, 2004). Possible advantages of this

information source are that people can visit a pharmacy without an appointment while

retaining a high level of control over the extent of their engagement with the pharmacist

(Benrimoj & Frommer, 2004). Research suggests that pharmacists can play a role in health

promotion programs (Armour et al., 2007; Barbanel, Eldridge, & Griffiths, 2003; Crockett,

Taylor, Grabham, & Stanford, 2006; Krass & Taylor, 2005; Lee, Grace, & Taylor, 2006;

Saini, Krass, & Armour, 2004) and this might be especially important in areas such as rural

Australia, where medical services are limited (Hourihan, Krass, & Chen, 2003; Sunderland

et al., 2006). In Australia, as well as condition specific fact sheets which are usually available

in pharmacies (http://www.guild.org.au/askyourpharmacist/content.asp?id=1017; http://

www.psa.org.au/site.php?id=61), there is an increasing emphasis placed on the provision

of cognitive pharmaceutical services (CPS), defined as ‘…the use of specialized knowledge

by pharmacists for the patient or health care professional for the purpose of promoting

effective and safe drug therapy’ (Cipolle, Strand, & Morley, cited in Albrecht et al. 2006,

p. 809). This includes the Consumer Medicine Information (CMI) program (Aslani, 2007)

and some condition-specific targeted programs for conditions such as asthma, diabetes and

communicable diseases (consultation paper 2006, http://www.health.gov.au/internet/main/

publishing.nsf/Content/pharmacy-4cpa). The CMI program is still developing, and the

evidence of its value is limited (Aslani, 2007). No epilepsy specific evaluation of pharmacy

support in Australia could be located.

5.4.1.6 Other health professionals

Because epilepsy is episodic and often well controlled by medication, contact with

occupational therapists, physiotherapists, speech pathologists, or social workers is not a

routine requirement, although some patients who have epilepsy surgery, and others with

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comorbidities, may be referred. This situation is reflected in the lack of epilepsy literature

specific to these professions. The renewed interest in the use of the ketogenic diet as a

treatment for epilepsy (Keene, 2006; Thiele, 2003), particularly in children, does facilitate

some involvement of dieticians in epilepsy management teams. However, the number of

patients affected is small.

5.4.2 Community based health organizations

Organizations formed by people with a specific health condition, their carers or supporters,

are many, varied, and growing in number. Some are small, run by volunteers, and based in

the home of a member, whereas others have multimillion dollar budgets and employ paid

professional staff (Wilson, 1999). They may call themselves self-help groups, community

based health agencies, patient support groups, lay bodies, etc. depending on their structure

and philosophy. Common goals are to provide information and support to their members,

raise public awareness, and influence policy (Wilson, 1999). Experience-based knowledge

is seen as one of the prime assets of consumer organizations providing the basis of many

activities including peer support (Glenton & Oxman, 1998) and it is of interest that a

study of such groups concluded that support seeking was highest for conditions viewed

as stigmatizing (Davison, Pennebaker, & Dickerson, 2000). These diverse organizations

have been described by a director of the UK Long-term Medical Conditions Alliance (since

renamed, Long-term Conditions Alliance, LTCA) as ‘…a source of innovation in health

care, the potential of which has yet to be fully developed, recognized and used’ (Wilson,

1999, p. 772).

Epilepsy support groups exist throughout the world, and more than one hundred are

linked to the umbrella of the International Bureau for Epilepsy (Lee, 2005). However each

epilepsy organization is independent and unique in structure and services. Consequently the

information and the range of services available from epilepsy associations are not consistent,

varying between, and even within, countries (http://www.ibe-epilepsy.org/links).

Information about consumer based epilepsy associations may reach patients receiving

medical care where the epilepsy association has active links with the local medical services.

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In Australia, for example, one major hospital has created an Emergency Department

discharge package for seizure patients which includes contact details for the local association

(Department of Neurology & Clinical Epidemiology and Health Services Evaluation Unit,

Melbourne Health, 2002). In some Australian epilepsy clinics, literature and, occasionally,

a representative from the local association are available for interested patients. In general

practice however, research suggests that Australian general practitioners (GPs) are not likely

to refer patients to an epilepsy association. As recently as 2002, a study found that GPs have

not been fully aware of the available support services and were not likely to refer patients

to the local epilepsy association (Thom et al., 2002). Collaboration between GPs and self-

help organizations generally in Australia, has been described as under utilized, although an

Australian study has suggested that beneficial partnerships could exist with the application

of appropriate efforts (Boyle, Posner, Del Mar, McLean, & Bush, 2003). Nevertheless in the

absence of active links between medical services and support organizations, making contact

with a support group appears to depend on the motivation of individual patients and the

patient’s awareness of such organizations as possible sources of information and support.

It is difficult to evaluate the overall benefit to patients of contact with an epilepsy support

group. The services received can range from a simple brochure, through to phone

counselling, face to face meetings, peer support (5.4.4), and access to self-management

courses, employment advocacy, or social support. A survey of such organizations led

by WHO found that of those epilepsy organizations that responded to the research

questionnaire, 95.8% were involved in education, 91.6% in awareness and advocacy, 56.8%

in treatment, 53.7% in rehabilitation and 53.7% in prevention (WHO, 2005c). The survey

found the ‘lay organizations’ played a significant role in dealing with non-medical aspects

such as education, employment, insurance and driving (WHO, 2005c). However detailed

published data are limited, restricting evaluation. Nevertheless, anecdotal material would

suggest that people who use epilepsy associations are positive about their experiences

(http://www.epilepsyfoundation.org/eCommunities/heroes/index.cfm?user_id=137). In

Australia, the Epilepsy Foundation of Victoria (EFV) conducted a random mail out survey

to past service users in 2000, with 260 responses. Seventy-nine percent indicated they had

not been able to access the same services from anywhere else (Deveson, 2000). Community

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based health organizations can also promote the well-being of their constituents indirectly,

through the promotion of community action and research into needs identified by members.

For example, in Victoria in 2006, people with epilepsy utilized workshops supported by

EFV to suggest a research agenda. Information was raised as an issue of concern, along with

community awareness, mobility, employment and education, disclosure, quality of life, sport

and costs (Walker, 2007).

Policy makers too, are endorsing the services of epilepsy associations, with UK clinical

epilepsy guidelines recommending that referrals to such organizations become routine

(Stokes et al., 2004). In the US the Centers for Disease Control and Prevention (CDC) has

collaborated strongly with the Epilepsy Foundation in developing an epilepsy program

(http://www.cdc.gov/epilepsy/). It has recommended that in trying to overcome the

disadvantages of a lower prevalence condition, organizations such as epilepsy agencies,

which have not been traditional partners in health programs, should now be included

in broad multidisciplinary partnerships, thus working towards an increased capacity for

epilepsy care, and preventing duplication in services (CDD, 2003).

5.4.3 Peer programs

5.4.3.1 Peer support

Peer support in various forms, can be identified in many historical situations (Borkman,

1990). It can be described as giving and receiving help based on an empathetic

understanding of another’s situation as a result of common experiences (Dunn, Steginga,

Occhipinti, & Wilson, 1999; Mead, Milton, & Curtis, 2001). Such identification with

others can build a sense of positive connection, with benefits to participants through

both the receiving and the giving of support (Reissman, 1990) either one to one, or more

formally through involvement with a group (Boyle et al., 2003). Because peer interaction

depends on the interpretation and communication of personal experience in a particular

setting, encounters are unique, and complex factors such as empathy, levels of disclosure,

appropriate peer identification, and timing, can all influence outcomes (Dunn et al., 1999;

Nekhlyudov & Yaker, 2002; Pistrang, Solomons, & Barker, 1999; Salzer, 2002). The three

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critical attributes of peer support have been summarized as emotional, informational and

appraisal or affirmation support (Dennis, 2003). Mead et al. (2001) emphasize the mutuality

of such support, describing it as a natural extension of community, not ‘...a modelling of

professionalized caretaking of people defined as defective’ (p. 136). In light of this comment

it is not surprising that where peer support becomes more formally structured, some authors

are wary of the possible minimization of mutual identification (Dennis, 2003). Where a

support group institutes formal training for specific peer support roles for example, or

employs peer supporters as paid staff (Solomon & Draine, 1995; Dennis, 2003), guidelines

will determine the framework of the peer-to-peer interaction. Nevertheless, formal peer

support is developing strongly, and in the US the role of peer specialist is now Medicaid-

reimbursable in some states. In addition to this a national trade association known as the

Peer Specialist Alliance of America was created in 2006 (www.peersupport.org/LtestNews.

htm). Such structured models may appear to some to threaten the integrity of peer support.

However, health services research does not appear to suggest that variations in application

are necessarily negative, rather, the array of developing programs, which draw on peer

support practice suggest that a flexible application of peer support can be a creative influence

in health care (Emerging New Practices in Organized Peer Support 2003), promoting diversity in

program development (Hogan, Linden, & Najarian, 2002). The diverse applications of peer

support and the lack of research to date means that a great deal more investigation will be

required to gain clear insight into what makes such programs successful (Hogan et al., 2002).

For the epilepsy community, peer support is a key role identified by most epilepsy agencies

internationally. Each organization determines its own style of support which might included

face to face contact, the telephone, or the internet. More formal programs such as the US

HOPE program exist in some countries, depending on local priorities and resources. Links

to international epilepsy groups can be found at the IBE website ( http://www.ibe-epilepsy.

org/links).

5.4.3.2 Peer education

There is no clear dividing line between what might be defined as peer support and peer

education. However the utilization of peer relationships as a vehicle for leadership and

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the delivery of a health promotion message, integrated into formal health promotion

programs, moves the role towards the realm of peer education (McDonald, Roche,

Durbridge, & Skinner, 2003; Stakic, Zielony, Bodiroza, & Kimzeke, 2003). The strategy

has been described as intuitively appealing, but lacking in conceptual clarity (Dennis, 2003;

McDonald et al., 2003; Orme & Starkey, 1999). Turner and Shepherd (1999) suggest that

peer education rests, not on a practical application of theory but rather, on lay principles

and beliefs; as a ‘method in search of a theory’. The rationale for peer education is based on

a number of assumptions, although different weights apply to each assumption in varied

settings. The assumptions include the cost effectiveness of programs, empowerment of

participants, credibility of peer leaders, utilization of established pathways, and positive role

modelling (McDonald et al., 2003; Turner & Shepherd, 1999). The explanatory theories

considered in relation to these assumptions include both psychological and sociological

theories (Mc Donald et al., 2003; Turner & Shepherd, 1999) all of which have some insight

to offer but none of which, on its own, would be relevant to all the current assumptions held

about peer education (Turner & Shepherd, 1999).

With the diversity of programs emerging which are underpinned by differing justifications,

applying a range of definitions, and delivered in varied settings, evaluation and outcome

comparisons are difficult (Hogan et al., 2002; McDonald et al., 2003; Orme & Starkey,

1999). It is not surprising that methodological difficulties have underpinned the ambivalent

results of a systematic review, which found the effectiveness of peer-delivered health

promotion for young people was not clear (Harden, Oakley, & Oliver, 2001) Nevertheless,

there are several key areas of peer education activity where a body of evidence is beginning

to build, and positive observations have been made. For example, peer education has been

used extensively in HIV/AIDS prevention (Kerrigan, 1999) and evaluation has shown

that these interventions can have a positive impact on sexually transmitted infections

or HIV incidence and/or risk behaviour (Kerrigan, 1999). In the area of alcohol and

drug use, research shows a positive influence on knowledge and, to a lesser extent, skills,

attitudes and behaviour (McDonald et al., 2003). In the area of chronic health conditions,

peer education is emerging as a key component in the delivery of group self-management

training; a strategy considered so successful that it is being incorporated into government

health services (Department of Health, 2001; Jordan & Osborne, 2007). Pioneered by

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Kate Lorig the core of the training is a focus on self-efficacy development, drawing on

Bandura’s work with social cognitive theory and using peer leaders as role models (Marks,

Allegrante, & Lorig, 2005a, 2005b). Hence, peer education has become increasingly aligned

to the concept of self-management. (A discussion of self-management training and epilepsy

follows in section 5.4.4). The role of a one-to-one peer educator in an ambulatory clinic has

been trialled in rheumatology, and found to provide a meaningful and useful addition to

traditional care, positively affecting patient knowledge and satisfaction with clinic services

(Branch, Lipsky, Nieman, & Lipsky, 1999).

Peer education overlaps with peer support in epilepsy agencies around the world. As

noted above (5.4.4.1) the nature of peer activities will vary between the epilepsy agencies

internationally, depending on the philosophy, environment, and resources of each local

agency (http://www.ibe-epilepsy.org/links).

5.4.4 Self-management programs

Self-management in health care, generally understood to describe the active participation

by people in their own health care (NHPAC, 2006), has become a key aspect of the

Australian national approach to chronic disease management (Jordan & Osborne, 2007).

The Australian government’s national chronic disease strategy states that self-management

‘…incorporates health promotion and risk reduction, informed decision making, care

planning, medication management and working with health care providers to attain the best

possible care and to effectively negotiate the often complex health system’ (NHPAC, 2006,

p. 12). While acknowledging that all people self-manage to some degree, the Australian

policy notes that there are opportunities to support people, their families and carers to

develop skills and resources which can maximize their capacity to self-manage’ (NHPAC,

2006). Australian health professionals are encouraged to assess individual self-management

attitudes prior to directing a patient towards any particular program or strategy (Battersby et

al., 2007).

Although self-management can be fostered through a broad array of tools and strategies

(Barrett, 2005), it is the formal concept of the self-management training program which

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has captured the interest of government health departments in a number of countries,

and health services internationally have begun to embrace this philosophy (Coleman &

Newton, 2005; WHO, 2002). In the UK, policy is now in place to mainstream group self-

management training within all NHS areas under a policy umbrella known as the expert

patients program (DH, 2001b). The highly structured courses are to be ‘lay led’ and cover

cognitive symptom management, exercise, nutrition, problem solving and communication

with health professionals. The Australian government also has funded such program

development (Jordon & Osborne, 2007). As mentioned earlier, Professor Kate Lorig at

Stamford university pioneered the early work of structured group self-management training

(Leong & Euller-Ziegler, 2004), with strong emphasis on the development of self-efficacy,

following the principles of Albert Bandura (Lorig & Holman, 2003). Perceived self-efficacy

refers to beliefs in one’s capabilities to organize and execute the courses of actions required

to produce given attainments (Bandura, cited in Lorig & Holman, 2003). With this in mind,

Lorig promoted the concept of the peer-led program using trained leaders, who themselves

have the chronic health condition, to model successful outcomes (Lorig & Holman, 2003).

Reviews suggest that self-management support can improve outcomes for different chronic

conditions, but that much needs to be learned about the relative effectiveness of specific

program components (Pearson et al., 2007). In the case of formal group self-management

courses, authors comparing the outcomes have noted that overall, data are uneven in

quality (Chodosh et al., 2005) and that the time frame and selection of evaluation tools and

methods are critical in determining the value of the courses (Battersby, 2006). Benefits may

possibly have been overstated by advocates of public health improvements (Buszewicz et

al., 2006; Newbould, Taylor, & Bury, 2006). In addition, evidence that such courses are only

attended by a small proportion of people with chronic conditions, most of whom are women

(Foster et al., 2003), highlights the fact that in considering the most appropriate tools to

engender self-management, ‘…one size does not fit all’ (Battersby, 2006, p. 267).

Epilepsy and the role of self-management has been examined by several Cochrane reviews

(Bradley & Lindsay, 2008; Shaw et al., 2007; Stokes et al., 2007). The analyses assessed the

effectiveness of group self-management education in improving health outcomes for adults

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and children with epilepsy. The reviews concluded that such programs based on increasing

understanding through psychological methods may improve knowledge about epilepsy,

certain behavioural outcomes, and reduce seizure frequency. However, little suitable data

were available for review with the authors identifying only one trial involving children,

known as the ACINDES program (Tieffenberg, Wood, Alonso, Tossutti, & Vicente, 2000),

and only three papers for the adult study which described two trials. The adult programs

were the Sepulveda Epilepsy Education (SEE) program (Helgeson, 1990), renamed the

Seizure and Epilepsy Program, and the Modular Service Education Package Epilepsy

(MOSES) (May & Pfafflin, 2002; Ried, Specht, Thornbecke, Goecke, & Wohlfarth, 2001).

The reviews noted that the studies suffered from methodological weaknesses and lacked

generalizability. No commentary could be found on the suitability for epilepsy of generic

chronic health self-management programs.

Despite the lack of evidence cited by the Cochrane review, other discussants reviewing

the SEE and MOSES programs using less rigid criteria, do speak positively about the

outcomes (Epilepsy Foundation, 2004; Shore, Perkins, & Austin, 2008). The issue with these

epilepsy specific programs appears to have been a very slow take up and development of

the concepts proposed, and a lack of rapid follow up action and critical research throughout

the epilepsy community. The report of the second US public health conference on epilepsy

noted that while ‘…these models and programs of self-care appear promising, they are

still being developed and tested in epilepsy and are thus not yet widely available’ (Epilepsy

Foundation, 2004, p. 20). This comment comes fourteen years after the first SEE evaluation

(Helgeson, 1990).

5.4.5 Independent searching

In 2001 a large US community tracking survey by the Center for Studying Health System

Change (HSC) asked adults where they had looked for, or obtained information about,

a personal health concern in the last 12 months (Tu & Hargraves, 2003). Twenty percent

had turned to friends or relatives, 23% used books or magazines, 11% used television

or radio, and 16% used the internet. The fact that family and friends and colleagues are

utilized as a key health information source is not an unusual study finding for information

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seeking generally (Fisher, Naumer, Durrance, Stromski, & Christiansen, 2005). Harris and

Dewdney (1994) noted that the preference for information is directed at that which is most

accessible, sometimes described as the principle of least effort, and preferably accompanied

by emotional support, with formal or institutional resources used as a last resort. With

the passage of time however, authors have noted the increasingly strong popularity of the

internet as a habitual information source, a phenomenon that may be replacing the long-

standing tradition of the strong-tie interpersonal source (Fisher, Naumer et al., 2005).

If people with epilepsy followed the pattern of seeking information from relatives and

friends it is possible that the information could be unhelpful given the fact that, despite

some improvement over time, knowledge of seizures in the community is still not always

accurate and negative attitudes to the condition are not uncommon (Jacoby, Gorry, Gamble,

& Baker, 2004), especially in less developed countries (Kleinman et al., 1995).

The reliability of the media as a source of epilepsy information is also in doubt. Whereas

some information released is provided directly by subject specialists, some is merely personal

opinion or a fictional reference to epilepsy in a book or film. Research has highlighted

the potential negative effect of epilepsy messages emanating from the media. A study of

general media communication, examining references to epilepsy and the law, found that

many of the cases quoted used negative images for popular appeal (Coyle & Brown, 1997). A

study of English language film found the view of epilepsy conveyed in film to be distorted,

sensationalized, and presented in the most frightening ways (Kerson, Kerson, & Kerson,

1999). In a later paper Kerson and Kerson (2006) noted that portrayals of seizures do not

reflect medical understanding. They noted that viewers are more likely to view a fictive

seizure than an actual seizure, and that many may think of them as accurate depictions.

A study of epilepsy in English language newspapers and magazines found that 31% of

stories contained scientific inaccuracy, exaggerated treatment claims, and overestimated the

risks of dying during a seizures. New drug therapies were often described inaccurately as

curative and without side effects. Demonic imagery was used to describe seizures in 6% of

stories (Krauss, Gondek, Krumholz, Paul, & Shen, 2000). Another study of film found that

stereotype and myth were used to depict epilepsy (Baxendale, 2003).

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5.4.5.1 The internet

The internet has seen exponential growth as a source of health information (Cline &

Haynes, 2001), however, actual figures recorded for usage vary according to the study

methodology. In the US, the Pew Internet and American Life Project began tracking

internet behaviour related to health in March 2000. At that time 54% of all internet users

in the US answered yes to the research question ‘had they ever searched for a health topic’.

In March 2003 the figure was 66%. However, later studies by the same organization

utilized a more probing question and yielded a response of 80%; almost half of the US adult

population (Fox & Fallows, 2003; Fox, 2008).

An Australian sample (not online) found 21% of participants used the internet for health

information. For those with internet access the figure was 96%. However, only 5.2% of

respondents preferred the internet, ranking it second with family and friends after doctor,

and higher than telephone help-lines, books, other health care practitioners, pharmacists,

pamphlets and the popular media. This consumer sample used the online information as a

second opinion (19%), in discussion with their doctor (16%) or as a catalyst for a change in

their health care management (Bessell, Silagy, Anderson, Hiller & Sansom, 2002). Although

internet information can at times be confusing, frustrating, of uneven quality, or less trusted

than other sources (Dart 2008; Khoo, Bolt, Babl, Jury, & Goldman, 2007), it appears that

the information is considered by consumers to be generally of more help than harm (Fox,

2006), with patients perceiving that the information empowers them to engage in discussion

with their doctors or other health professionals (Himmel, Meyer, Kochen & Michelmann,

2005; Morahan-Martin, 2004; Volk, 2007). An Australian study of parents with deaf

children, found that half the parents talked to their doctor or hearing professional about

the information they found on the internet (Porter & Edririppulige, 2007) and recent US

studies indicate similar effects on patient-provider interactions (Fox, 2006).

As health policy makers have begun to promote the concept of self-management for chronic

conditions, web-based information and support sites have become a popular option. Indeed,

research suggests that online patients who have a chronic condition are more likely than

other online patients to seek and use internet information (Fox, 2007). Of these internet

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users, those with a new diagnosis or a recent health crisis are the most actively involved in

seeking out and utilizing the information (Fox, 2008). Using the internet, it is possible for an

individual to tap into the knowledge base of web pages worldwide, extending the possibility

of communicating with people who have rare conditions (NICS, 2003), and facilitating

interpersonal support such as that provided through chat rooms, regardless of geographical

location. Accessing internet information may also appeal to health information seekers

as a strategy to avoid facing possible stigma (NICS, 2003). The negative aspect of this

information source is that material from specialist organizations is available side-by-side with

the personal opinion of anyone who cares to express it via a website. Internet researchers

have observed that much web searching is suboptimal, and information evaluation

techniques are often inadequate. These factors can act as barriers to appropriate information

retrieval by consumers (Morahan-Martin, 2004). Other factors influencing access to internet

health information are socioeconomic status, broadband access at home, gender and age

(Dart, 2008; Fox, 2006).

Epilepsy information through internet sources is subject to the same positive and negative

factors as all internet health information with some excellent material offered but the quality

of the information being uneven (Cline & Hayes, 2001). Epilepsy specific investigations into

the use of internet health information by patients with epilepsy, and their families, is limited.

However, an investigation into the information seeking of families of children with epilepsy

found that the internet was the most commonly accessed source outside of the clinic (Lu

et al., 2005) Similarly, Escoffery et al. (2008) found that 57% of a clinic group used the

internet for health information and in most cases this included epilepsy information.

In consideration of the rapid changes which are occurring in this area of patient education,

authors suggest that guidance regarding reliable websites should be part of the patient

support process, and a positive provider attitude to patient use of external information

sources will be essential to maintaining and improving patient-provider relationships

(Bylund et al., 2007; Lu et al, 2005).

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5.5 Summary

Chapter 5 has examined the issue of information and support for seizure and epilepsy

patients. Beginning with a brief consideration of health information as a general issue, the

chapter then examined the evidence of need for such services in epilepsy patients. The

research suggests that patients with epilepsy are not well informed about their condition and

that their support needs are not well met. The possible sources of information and support

were identified and each explored to identify negative and positive aspects of the service.

No one option clearly stands out as a superior patient resource for epilepsy information.

Health professionals are not always well informed about seizures, and when they are there

may be insufficient time available for adequate discussion. Community based support groups

offer information and support, which usually includes a strong core of experience-based

knowledge. However, the nature of the support varies from service to service, and there is

little evaluation of such services readily available. In any case, unless these services are well

connected to medical services patients may not become aware of their existence.

Peer support and education is to be found through a variety of settings. It is often integral

to the work of community based groups, and can be informal or part of more structured

support services. However, although the concept of peer support is well regarded as a

support and education strategy, both generally and in health services, evaluation of the

strategy in epilepsy services is very limited. Peer support is also a key component of the

increasingly popular health self-management courses. With government encouragement

and funding, such courses are becoming high profile, accessible vehicles for the provision

of information and education for chronic health conditions generally. Nevertheless, patients

with seizures and epilepsy are not currently well served by this approach, either with

epilepsy-specific programs, or generic programs.

Independent searching for health information is a common strategy across the community.

Research suggests that people often seek out their own information through friends, the

media and increasingly, the internet. However, given the low level of community knowledge

about epilepsy, which is also reflected in the media, these sources may not meet the needs

of patients for accurate, comprehensive epilepsy information. The internet offers some

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excellent material about seizures and epilepsy, but access is hampered by all the general

issues affecting internet use. The very uneven quality of information available, combined

with factors such as the internet search skills of the user and quality of available facilities,

result in uncertain outcomes for those who seek knowledge through this source.

Having reviewed a range of possible information and support sources for people with

seizures and epilepsy, it is apparent that, although the EFV First Seizure Clinic program

presented in this thesis draws on a number of the strategies discussed in this chapter,

it does not fit precisely into any existing model. The program is carried out by workers

who, while well trained to provide epilepsy information and education, are not qualified

health professionals. In fact, since the workers have personal experience of epilepsy, and

disclose this fact to the patients, they could be defined as peer support workers. However,

the information and support offered is not based purely on personal experience, but also

on comprehensive training. Discussion of personal experiences is also limited, unless

the patients choose to discuss this. Although the information provided is based on an

agreed range of topics, each patient is treated as an individual, with specific information

provided where required. The program is not a formal self-management training course,

but nevertheless, the intervention aims to provide information, self confidence and support

which can facilitate patient self-management. In addition to the clinic consultation, resource

material is available with referrals to additional reliable information provided, and ongoing

contact is available should the patient so desire.

While funded and designed by a community based epilepsy support agency, the EFV

program is integrated into a medical setting, and operates in conjunction and with full

cooperation, from the medical staff. It is of interest also to note that the support worker

roles have been both voluntary and paid positions. Initially, it was a combination of budget

constraints, plus a commitment to the value of peer support that led to the development of

these unusual roles, and as such they were voluntary. However, as funds became available

the roles were reclassified as core business for the agency and they became paid positions,

creating a unique program of information and support which, prior to this thesis, has not

been formally evaluated.

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With the completion of this chapter the review of literature underpinning the thesis

is complete. Chapter 6 now provides a short bridging chapter between the theoretical

framework of the thesis, and the practical aspects of study design, data collection and the

analyses of results.

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Chapter 6

Summary of literature and review of research objectives

6.1 Introduction

Chapter 6 begins with a brief summary of the literature presented in chapters 2–5, reviewing

the main themes of each chapter, and highlighting the points of association with the

practical research of this project (6.2–6.6). The research objectives are discussed (6.7),

preparing the reader to assess the methodology and results of the project which follow in

chapters 7–10. A summary of chapter 6 and preview of chapter 7 concludes the chapter (6.8).

6.2 Chapter 2

The review of literature for this thesis began with an introduction to seizures and epilepsy

as medical conditions. Chapter 2 outlined the definitions and epidemiology which frame this

discussion, highlighting the broad spectrum of symptoms and disorders which are involved,

and the percentages of the population affected. Although 10% of the population may have a

seizure at some time in their life, not all seizures lead to a diagnosis of epilepsy. Adding to the

complexity, epilepsy is not just one condition, but rather it is a diverse family of conditions

which have in common an abnormally increased predisposition to seizures. The cumulative

incidence of epilepsy is approximately 3–5% which identifies it as a lower prevalence chronic

disorder compared to some higher profile health conditions such as cardiovascular disease

and diabetes. Nevertheless, data from the Global Burden of Disease (GBD) study in 2000

suggests that for epilepsy, the aggregate GBD is 0.5%. This can be compared with multiple

sclerosis at 0.1%, or breast cancer at 0.4%, or diabetes at 1.3%. The mortality rate for epilepsy

is generally agreed to be 2–3 times higher than that of the general population.

Chapter 2 also discussed the diagnosis of seizures and epilepsy, noting the varied

manifestations and causes of seizures which complicate the diagnostic process. Seizures and

non-seizure events can often be confused, and the rate of misdiagnosis has been estimated

in some studies to be as high as 25%. Effective treatment of epilepsy depends on an

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accurate diagnosis, and early assessment following a first seizure is recommended. Because

the aetiological processes of epilepsy are poorly understood, the study of comorbidity is

also affected by this lack of knowledge. Despite increased identification and description of

coexisting conditions, an understanding of the direction of cause and effect remains limited.

Key areas of concern include cognitive function, psychiatric, and psychological disorders.

Despite the fact that epilepsy is not a high prevalence condition, it has an important

effect on the health of the community. The uncertainty surrounding diagnosis, lack of

understanding as to the causes, its unpredictability, its mortality rate, and its relative burden

of disease are compelling reasons to study this condition.

6.3 Chapter 3

Chapter 3 focussed on psychosocial sequelae of seizures and epilepsy, examining in

detail anxiety, depression, and stigma. Historically, stigma and superstition have strongly

influenced community attitudes to people with epilepsy; characterizing them as people with

undesirable personality and behaviour traits. Despite the advance of time, more enlightened

attitudes, and the development of epilepsy research programs, an association between

epilepsy and psychosocial morbidity continues to be described. It is possible, especially in

the earlier research, that a strong methodological bias has led to an overestimation of these

problems, due to a reliance on the data of specialist epilepsy clinics. Such cohorts usually

contain patients with difficult to control conditions, and do not represent a cross-section

of people in the community with epilepsy. Also where cohorts consist of people with

longstanding epilepsy, it is difficult to distinguish between the effect of the condition, the

effect of treatment and the effect of having lived with the condition. Nevertheless, even

with the benefit of more representative samples, it would appear that a range of psychiatric

disorders, especially interictal depression and anxiety, are more common in people with

epilepsy than the general population. Depression and anxiety are considered to be under-

recognized and under-treated, and both exert a stronger influence on Quality of Life

than clinical factors. The reasons for the psychiatric comorbidity are not well understood.

Contributing factors are considered to be multifactorial, and grouped under three main

headings: neurobiological, iatrogenic and psychosocial.

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Chapter 3 also considered stigma and its relationship to epilepsy. The association between

stigma and epilepsy has been frequently recorded historically, and diverse examples of

epilepsy stigma and discrimination continue to be been documented internationally. Stigma

is increasingly recognized for its ability to negatively influence health outcomes in patients,

and the perceived impact of stigma in epilepsy is now included as an outcome measure in

research programs. Studies have found an association between stigma and negative beliefs

about epilepsy management, and poor psychosocial outcomes. In Australia, the Human

Rights Commission (Sheehan, 1985) found that epilepsy is often experienced as a severe

social handicap because of the stigma which is attached to it. Quality medical care which

reduces seizures may help to reduce stigma, and the framework of delivery itself has the

potential to be either a negative or positive influence, depending on the style and values of

the service.

In caring for people with epilepsy, it is clear that attention must be directed at psychosocial

issues, in particular anxiety, depression and stigma. These factors have been shown to have

a powerful influence on patient well-being, and any treatment program will need to address

them, in addition to controlling seizures. By gathering baseline psychosocial data on people

with new-onset seizures, this project tracked patients in the year following their first seizure

to better understand the early associations between epilepsy and anxiety, depression and

stigma.

6.4 Chapter 4

Chapter 4 examined the frameworks of care within which seizures and epilepsy are

managed. The literature indicates that technological development and improved

understanding of seizure pathophysiology do have the potential to improve medical

management, however, the resources that are allocated to deliver quality care, even in

countries with well developed health services, appear to be inadequate. Knowledge of

seizure management is not well dispersed throughout the medical workforce, and specialist

participation is not adequately available at the level required, especially at the point

of diagnosis. To date there has been a confused and often ineffective approach to the

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integration of primary and specialist care. Recently published guidelines for the delivery

of care have begun to emphasize the need to strive for the appropriate diagnosis and

treatment at the time of new-onset seizures. Key recommendations call for a focus on rapid

specialist assessment in the early weeks to minimize misdiagnosis and delayed diagnosis.

The provision of epilepsy specific clinical expertise in the early days could also accelerate

the instigation of the most appropriate antiepileptic drug (AED) therapy. The ultimate aim

would be to minimize the negative impact of seizures and their treatment on the patient,

both initially and over time. A positive outcome of good medical management could also

be a reduction of negative psychosocial effects for patients; however, confirmatory evidence

is rare. The First Seizure Clinic is one innovative strategy which is intended to provide

targeted early assessment of possible first seizures.

Chapter 4 also noted that at the public policy level, epilepsy has fallen through the cracks

of many major policy initiatives focussed on chronic health. Where any epilepsy guidelines

have arisen, it appears they have been triggered, to a great extent, by community pressure.

Policy makers have acknowledged that epilepsy-focussed community groups have an

important role to play in leadership and collaboration with other health services, especially

in the area of information, education, and support. This includes countries with well-

developed medical services. The literature notes that patients have been very unhappy with

the information and support they have received. However, what makes an effective epilepsy

information or education program has not been well evaluated.

The concept of a First Seizure Clinic offers a contemporary solution to management of

possible new-onset seizure patients. Having evolved from a background of inadequate

epilepsy care, it reflects the spirit of emerging guidelines, taking a proactive approach to

achieve early diagnosis and treatment. This research describes the patients attending such a

clinic, and provides an opportunity to assess patient outcomes in such a setting.

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6.5 Chapter 5

Chapter 5 considered the options for provision of epilepsy information and support. Studies

continue to conclude that the information and counselling needs of people with epilepsy

have been largely unmet. Although patients do turn to health professionals, especially

doctors, time for discussion is limited and not all are well informed about seizures unless

they specialize in the area of epilepsy. The support program provided by the Epilepsy

Foundation of Victoria (EFV) offers a unique blend of strategies and provides a model

worthy of investigation.

6.6 Key points

The literature confirms that epilepsy, while a lower prevalence condition, carries a

considerable burden of disease. The mortality rate is notable and extensive comorbidity

is attached to the condition, especially in regard to depression, anxiety and stigma. While

the psychosocial comorbidity of epilepsy is acknowledged, understanding of causality and

the interrelationship with epilepsy is limited. Much information is confused by the lack of

baseline data from which to track the psychosocial outcomes of newly diagnosed epilepsy

through time and circumstance.

Although there is much about seizures and epilepsy that is not understood, within the

practice of medicine very successful treatment options have been identified and developed.

Nonetheless, the integration of medical expertise with policies that can deliver quality

comprehensive care throughout the community is not yet a reality. There is a lack of

resources allocated to the area, and policy development appears to be hampered by the

fact that epilepsy is a lower prevalence condition, which does not fit well into the regular

approaches applied to most common disorders. Guidelines for the improvement of

epilepsy care promote a more proactive attitude to seizures and epilepsy, especially in

the management of new-onset seizures. One expectation is that access to improved early

medical management and a subsequent minimization of seizures will lead to a reduction in

overall psychosocial comorbidity.

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The lack of adequate patient information and support services has been repeatedly identified

as a negative aspect of epilepsy management. However, the expansion of such programs

by mainstream health service providers appears to have overlooked epilepsy. Emerging

epilepsy guidelines encourage creative collaborations between all stakeholders to strive for

improvement. Epilepsy health policy development and care delivery may be enhanced by the

greater participation and leadership of community based agencies.

6.7 Research response

The First Seizure Clinic study forming the basis of this thesis, was established to

complement the clinical assessment of patient outcomes in the First Seizure Clinic setting

by assessing the psychosocial characteristics of the clinic patients at baseline, and evaluating

outcomes for those characteristics over the following 12 months. Given that baseline

psychosocial characteristics of epilepsy patients have been rarely measured, the First Seizure

Clinic with its fast track incoming referral of patients with possible first seizures, offered

a unique opportunity to capture data of a kind which has been very limited to date. With

a cohort enrolled prospectively prior to the confirmation of a diagnosis, and all managed

under the same protocols, the confounding influences which could occur if such a cohort is

gathered from numerous practitioners and settings were reduced. In addition by collecting

the data of all patients, regardless of diagnosis, the data of patients with a seizure-related

diagnosis, could be compared against an internal sample of patients, undergoing a very

similar diagnostic experience, but with a non-seizure related diagnosis.

The concept of rapid specialist care for new onset seizures may improve overall seizure

management and reduce associated psychosocial problems. However, evidence to this effect

is limited and the First Seizure Clinic research project offered an excellent opportunity

to contribute data to this discussion by observing the outcomes over time for patients

managed in such a setting. In light of the difficulties associated with the accurate diagnosis

of new-onset seizures, it is possible that examination of the psychosocial characteristics

associated with the non-seizure diagnoses, might identify some features which could assist

in distinguishing seizure cases from non-seizure cases.

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A major aim of this study is to present descriptive data from a cross section of First Seizure

Clinic patients assessed over a twelve month time period. This is presented in chapter 8.

Data collected includes, age, gender, residential setting, level of education, occupational

status, diagnostic category, general health, global quality of life measured as a single question

(GQoL), past worry, future worry, anxiety, depression, perceived stigma and the Liverpool

Adverse Events Profile (LAEP) which assesses symptoms of possible adverse effects of

antiepileptic drugs. Specific hypotheses were not developed for this exploratory aspect of

the study, although some general expectations, based on the literature included notable levels

of distress in seizure patients and increasing reports of symptoms reflecting the adverse

effects of medication in those patients for whom treatment was prescribed. Data for this

aspect of the study were analyzed with descriptive statistics chosen to give as full and clear a

description of the sample as possible, and also based on whether the variable being described

was categorical or numeric. In some cases, simple inferential statistics such as Chi-square or

one-way ANOVA were used, for example to compare relationships between diagnosis and

gender or age.

A further exploratory aspect of the study was to examine the relationships between the

eight key variables of general health, GQoL, past worry, future worry, anxiety, depression,

perceived stigma and LAEP using correlation analysis. As well as general descriptive

information, these data provide baseline information for the testing of the intervention study.

The First Seizure Clinic study also provides an excellent opportunity to evaluate the effect

of a support program and within this First Seizure Clinic there exists an example of such a

service delivered through the creative collaboration of stakeholders. Utilizing its experience

as a community based agency, the Epilepsy Foundation of Victoria (EFV) provides a patient

support service, drawing from a range of existing strategies for information provision, to

offer a program not described elsewhere. It came about as a natural development of the

organization’s past experience with patient need, and through the mutual desire of some key

medical service providers and the EFV to align support services more closely with treatment

centres (EFV, 2003). Therefore a Randomized Control Trial (RCT) was incorporated within

the First Seizure Clinic research study. The RCT aimed to evaluate the effect of the EFV

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program on the psychosocial outcomes for the seizure and epilepsy patients in the First

Seizure Clinic cohort over 12 months. Despite their highly regarded status as a measure

of an intervention, the use of an RCT for the assessment of psychosocial outcomes can

be difficult to integrate into the everyday clinic setting, and has rarely been utilized in

the assessment of psychosocial outcomes in epilepsy interventions. There challenges of

establishing and maintaining the protocol for the study are discussed in 7.3. This research

project has developed and modelled the use of a pragmatic RCT. These data are presented in

chapter 9.

In assessing the information and support service, this study asks the following questions:

does the support provided through the EFV First Seizure Clinic support program affect •

a range of psychosocial outcomes in patients

does the support service provided through the First Seizure Clinic affect the •

information seeking behaviour of patients

is the information provided by the support service considered helpful by the participants•

does the First Seizure Clinic support service affect patient satisfaction with their overall •

experience of the First Seizure Clinic.

It was hypothesized that, in relation to a control group, the intervention group would show

greater improvements on their baseline scores for general health GQoL, past worry, future

worry, anxiety, depression and perceived stigma, at both three months and twelve months

post-test periods. These hypotheses applied only to the diagnostic categories of seizure and

epilepsy because the support program was designed primarily for seizure patients and not

for the variety of alternative diagnoses found within the clinic. Data for this aspect of the

study were analyzed using mixed between-within subjects ANOVAS with study group as the

between subjects factor and baseline/3 month or baseline/12 month scores on key variables

as listed above as the dependent variables.

To compare information seeking between study groups, patients were asked to indicate

which of 13 information sources they used and how helpful they were. These data were

graphed for visual inspection.

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To compare patient satisfaction with the clinic service between groups, a service satisfaction

scale was constructed. The mean scores of the two groups were compared using a one-way

ANOVA and to assess differential change in satisfaction over time a mixed between-within

subjects ANOVA was utilized.

One additional line of enquiry was introduced to this study in response to early data

collected using the Liverpool Adverse Events Profile (LAEP). Issues raised by the

examination of LAEP data in chapter 8 suggested further analysis of the LAEP would be

beneficial, using sub-groups of the existing cohort. These data are presented in chapter 10.

6.8 Summary

Chapter 6 has briefly summarized the literature review of chapters 2–5, and highlighted

the points of association with the practical research. Chapter 7 now follows, outlining the

methodology and the practical aspects of the data collection and management.

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Chapter 7

Methodology

7.1 Introduction

Collected research data cannot be accepted as a neutral arrangement of inevitable facts.

It is a social product, created within the cultural environment of its time, shaped by the

philosophical frameworks of the individuals and institutions guiding the production

of that data. As such it always reflects underlying beliefs and values about what it is we

need to know. (Krieger, as cited in Daly, Kelleher, & Gliksman, 1997).

The data of this current thesis are, as Kreiger suggests, a reflection of their environment

and the questions addressed echo the social and medical dialogue from which the research

has emerged. The preceding chapters have sought to identify the factors influencing

the rationale for this thesis. Chapter 7 now outlines the methodology underpinning the

collection of the research data and explains the practical aspects of the data collection and

management.

The rationale and development of the research project is first presented (7.2.1), followed by

information about the setting (7.2.2–7.2.4), and the recruitment details (7.2.5–7.2.7). The

participants are described (7.2.8) and data management procedures defined (7.2.9). Outcome

measurement is discussed (7.2.10) and protocols for the randomized controlled trial (RCT)

are presented (7.3). The chapter concludes with a brief overview of the statistical methods

used in the study (7.4), a summary of chapter 7, and a preview of chapter 8 (7.5).

7.2 A study of First Seizure Clinic patients

7.2.1 Rationale and development

The research project attached to this thesis was commenced by the author in 2001. The

project was constructed to recruit participants as closely as possible to the time of a first

seizure diagnosis, thus allowing a meaningful description of baseline characteristics,

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detection of changes in that status over time, and comparisons with similar cohorts

both nationally and internationally. In addition, the project was constructed to test an

intervention providing patient support. Since a well done randomized controlled trial is

considered to be the best source of evidence for the effect of interventions (Australian

National Health and Medical Research Council [NHMRC] 2000), the protocols were

constructed in such a way that an RCT could be successfully nested within the project.

To select a group of patients who were actually ‘new’ to the seizure diagnosis, participants

were recruited prospectively, during their first appointment at a First Seizure Clinic, prior

to the confirmation of a diagnosis. This early recruitment approach, which required the

enrolment of all new clinic attendees, regardless of any provisional diagnosis prior to

attendance, also allowed the establishment of a unique internal comparison group made up

of patients who, although they were referred with an initial diagnosis of a possible seizure,

and recruited to the study on that basis, subsequently received a non-seizure diagnosis.

The project used (for the most part) quantitative outcome measures in order to facilitate

statistical evaluation of the data and evaluation of change over time. Where possible

the measures selected were generally accepted methods previously adopted by similar

international studies. As an aim of the project was to reflect the outcomes from a patient

perspective, patient self-reporting was chosen as the method of data collection, with pen and

paper questionnaires used to collect the data. Such questionnaires offer participants a degree

of privacy and self control over their involvement in such a study, with the added bonus of

being a cost-effective method which can be continued into the follow up phase using mail

services, ensuring consistency in the mode of administration at all time points (Jacoby, 1996).

In early 2002, it was decided that the author would prepare a PhD thesis based on this

research project focussing on a subset of selected data. The primary aim of the thesis would

be to carry out a twelve month prospective assessment of psychosocial factors in people

who had experienced a possible first seizure and been referred to a First Seizure Clinic.

The secondary aim would be to evaluate the effect of a patient support service on the

psychosocial outcomes for First Seizure Clinic patients with a seizure-related diagnosis.

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7.2.2 Location

The research project began in the First Seizure Clinic at The Alfred hospital in November

2001, extending to include the First Seizure Clinic at the Royal Melbourne Hospital in May

2003. Both hospitals are large, public, general hospitals located in the Melbourne (Australia)

inner city area. Baseline data collection concluded in August 2004, 3-month data collection

concluded in December 2004, and the 12-month data collection concluded in August 2005.

Approval for this research was received from the ethics committees of The Alfred, the

Royal Melbourne Hospital, and Swinburne University. Copies of the approvals are included

in appendix B.

7.2.3 Study population

Patients are predominantly referred to the First Seizure Clinics at both hospitals by the

Emergency Department within each hospital, but there are also some referrals from

wards and clinics within each hospital, smaller outer metropolitan hospitals, and general

practitioners. Referrals are generally made where a person with no known pre-existing

diagnosis of epilepsy experiences a suspected seizure. The First Seizure Clinic provides

further investigative tests if required, a consultation with an epilepsy specialist and

clarification of the diagnosis.

7.2.4 Clinic structure

The First Seizure Clinics at The Alfred and the Royal Melbourne Hospital are regular

outpatient clinics supervised by consultant neurologists who specialize in epilepsy

management. Additional medical staff are either epilepsy fellows or neurology registrars.

The two non-medical support workers are employees of the Epilepsy Foundation of Victoria

who share the support work at both hospitals on a rotating roster. The protocol for patients

referred to the First Seizure Clinics is for an EEG test to be carried out, followed by an

appointment at a First Seizure Clinic within two weeks of the occurrence of the suspected

seizure, or as soon as possible after that date. Following the first consultation, if up-to-date

and satisfactory MRI scans are not yet available, they will be ordered. Patients attend follow

up reviews in the First Seizure Clinic until they are either discharged or referred elsewhere.

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7.2.5 Recruitment

During this project all new First Seizure Clinic patients 16 years and over, who kept their

appointment for an EEG prior to the first clinic appointment, were handed a research

project information pack. This pack included a patient information sheet, a baseline

questionnaire, a consent form, and an explanatory letter asking them to read through the

material and bring it with them to their first clinic appointment.

Subsequently, the researcher met each patient as he or she arrived for the initial visit to the

First Seizure Clinic. The researcher discussed the project with each patient checking possible

reasons for exclusion (7.2.6). Patients for whom exclusion criteria did not apply were invited

to participate. Those who agreed to volunteer then signed a consent form and completed a

baseline questionnaire.

Where a patient did not attend for an EEG prior to their first clinic visit, or the patient

failed to receive an information pack, the researcher provided the patient with the project

information pack on the day of the first clinic appointment, thereafter, interviewing

each patient and, where appropriate, extending an invitation to join the project as per the

aforementioned protocol. Patients aged 16 and over but less than 18 required parental

consent. All patient information material and consent forms are included in appendices C

and D.

7.2.6 Exclusions

Reasons for exclusion from the project were: an age of less than 16 years, a pre-existing

diagnosis of epilepsy, the inability of a patient to read or complete the questionnaire due

to cognitive or language-related reasons, including the non-availability of an appropriate

interpreter.

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7.2.7 Allocation to diagnostic categories

At the initial consultation, the doctor gave all patients a preliminary diagnosis. Where a

seizure was considered likely to have occurred it was classified, as far is possible on the

information available, according to the International League Against Epilepsy (ILAE)

guidelines (2.2–2.3). Using this information all study participants were subsequently

grouped for analysis into one of four categories as follows:

Epilepsy: recurrent (two or more) epileptic seizures, unprovoked by any immediate cause, occurring more than 24 hours apart.

Seizure: patients with a confirmed seizure diagnosis, but no diagnosis of epilepsy.

Syncope: episode considered by the clinic doctor to have been a syncopal event (faint).

Other: undiagnosed patients and others with non-seizure events associated with psychological disturbance, cardiac, or other conditions.

Subsequent to the initial diagnosis, additional information sometimes led to a change in

the diagnosis. This change was recorded in the patient’s study data and all diagnoses were

reconfirmed at twelve months.

7.2.8 Participants

Of the 297 patients considered for the study, 245 were enrolled at baseline. Section 7.9

outlines the exclusions and refusals and describes the diagnostic categories, gender, and age

of all participants. Social background data are presented in the first results chapter (8.3).

7.2.8.1 Exclusions and refusals

From the 297 patients considered for the study, there were 13 exclusions and 39 refusals.

The 13 exclusions were for cognitive difficulties preventing participation (N = 5) and for

languages other than English for which translation was not available (N = 8). Seven of the

exclusions were female and six were male. Their average age was 51 years which was older

than the overall cohort. In those who refused participation the gender balance was also

evenly distributed. The average age of 45 years was also higher than that of the cohort.

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7.2.8.2 Diagnostic categories

The diagnosis for all participants was made by a neurologist specializing in epilepsy, as

discussed above (7.2.7), and each patient was subsequently assigned to one of the four broad

diagnostic categories for the purpose of the analysis. Diagnoses showed about one-third

epilepsy, one-third single seizure and the rest split between the categories of syncope and

‘other’ (Table 1).

7.2.8.3 Age

The mean recruitment age of the study population at baseline was 36.5 years. Although

the age of patients ranged from 16–86, the median age was 32 years indicating a youthful

cohort. There were no significant differences between the diagnostic categories for

recruitment age at baseline [F(3,241) = .63, p > .05], three months [F(3,154) = .441, p > .05], or

twelve months [F(3,105) = .651, p > .05].

7.2.8.4 Gender

There was an uneven ratio of males and females enrolled in the study, with 65 % of the

overall sample being male and 35 % female. Although approximately twice as many men

as women attended the clinic, the diagnoses occurred in a similar proportional rate in both

sexes at baseline (Chi-Square (3) = .85, p > .05), three months (Chi-Square (3) = 1.07, p > .05)

and twelve months (Chi-Square (3) = 1.26, p > .05).

Baseline 3-months 12-months

N (%) N (%) N (%)

Epilepsy 85 (34.7) 57 (36.1) 39 (35.8)

Seizure 82 (33.5) 50 (31.6) 35 (32.1)

Syncope 33 (13.4) 26 (16.5) 15 (13.8)

Other 45 (18.4) 25 (15.8) 20 (18.3)

Total 245 (100) 158 (100) 109 (100)

Table 1. Diagnostic categories

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7.2.9 Data management

7.2.9.1 Data collection

Self-reported written questionnaires were provided to all participants at the first clinic visit

(baseline), three months, and twelve months. The baseline questionnaires were completed

and returned to the researcher prior to the first consultation and the 3-month and 12-month

questionnaires were mailed to all participants. In order to maximize response rates (Cramer,

2002; Cramer & ILAE Subcommission on Outcome Measurement in Epilepsy, 2002),

the mail out to participants included an explanatory letter and a replied paid envelope. In

addition, if questionnaires were not returned after the first mail out, a second questionnaire

was posted. If a second mail out failed to gain a response a phone call was made to check if

the questionnaires had been received. If it was not possible to facilitate the completion and

submission of a questionnaire from the patient at that point the questionnaire was deemed

to be lost to the study. In cases where questionnaires were returned to sender with address

unknown a check was made with the hospital administrative database to identify any

address updates that might be available. A phone call was also made in case that number had

remained unchanged. If these actions failed to locate the patient, they were also deemed to

be lost to the study. Patients who made a specific request to leave the study were classified

as withdrawn. Demographic details of those who withdrew or were lost to follow up are

provided in chapter 8 (8.3.2).

7.2.9.2 Data storage

The contact details and diagnosis for each participant were collected by the researcher at

the first visit and recorded against an ID number in a confidential password protected Excel

database. Data from the questionnaires were then entered into the Statistical Package for

the Social Sciences (SPSS) database, also password protected, using the non-identifying ID

number. Patient consent forms and questionnaires (labelled only by the ID number) were

stored in locked filing cabinets in a secure university building.

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7.2.10 Outcome measurement

7.2.10.1 Overview

One emerging research strategy for the assessment of patient psychosocial well-being is the

use of patient-reported Quality of Life (QOL) measures (Hermann, 1992). Such measures

aim to capture a multidimensional image of a patient’s well-being as it relates to a specific

health condition; a strategy considered appropriate for the First Seizure Clinic research

project. However, epilepsy is a latecomer to QOL research (Cramer, 1993; Hermann, 1992;

Jacoby, 1996) and development in the field has been held back by the failure to arrive at a

standardized approach, the lack of information about the practical use of the scales, and the

inadequate understanding of outcomes for subgroups when epilepsy is such a heterogeneous

condition (Berto, 2002). Of those measures that do exist, most have been designed for use

in populations with well-established epilepsy, which was not the case in the current project.

The participants in the First Seizure Clinic project all presented to the clinic with the

provisional diagnosis of a possible seizure, and some were subsequently diagnosed with non-

seizure-related conditions. For all participants the measures adopted needed to be acceptable

and meaningful for the life of the project, and most existing epilepsy QOL scales at the

time of the project’s design, did not satisfy this requirement. The language of most epilepsy

QOL scales, as one might expect, includes frequent references to seizures or epilepsy and

this presents a barrier to use with those who have experienced a seizure-like event but

are subsequently diagnosed as non-seizure patients. Even where patients have received a

diagnosis of seizure or epilepsy, there can be a reluctance to accept or identify with this

label. In addition the diagnosis is new, so that questions at baseline which assume some

experience of living with epilepsy over time are meaningless to newly diagnosed patients.

One QOL measure designed with the needs of newly diagnosed seizure patients in mind,

NEWQOL (Quality of Life in Newly Diagnosed Epilepsy), was identified prior to the

commencement of the project (Abetz, Jacoby, Baker, & McNulty, 2000). Created by a

Liverpool based research team including Ann Jacoby and Gus Baker, and emerging from

their earlier work on epilepsy psychometric measures, NEWQOL had been created for use

with people experiencing new-onset seizures. Following the style of earlier work by the

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Liverpool team, NEWQOL did not offer one summary measure but included a collection

of scales measuring a range of psychosocial variables. The approach of the Liverpool group

is to select appropriate measures and tailor a ‘battery’ to assist in answering specific clinical

questions. Hence, not all questions are used repeatedly in every study (Baker et al., 1998;

Jacoby, 1996). For the First Seizure Clinic research project it was decided to draw on the

example of NEWQOL in the initial selection of outcome measures and a questionnaire was

obtained directly form the Liverpool team. This questionnaire was used to gather data from

the First Seizure Clinic in 2001. When the study was approved as a PhD project in 2002

early data were assessed as pilot material in light of ongoing development of the NEWQOL

work. The NEWQOL questions had been reviewed for inclusion in an international study

of newly diagnosed patients known as SANAD (a randomized controlled trial examining

the longer-term outcomes of standard versus new antiepileptic drugs) (Marson et al., 2007).

The study protocol can be accessed electronically (http://www.liv.ac.uk/neuroscience/

research/sanad/downloads.htm). In the SANAD study, some early NEWQOL questions

had been removed, or slightly modified, and others included. However, overall, continuity

was good between the two versions allowing for the pilot data from the First Seizure

Clinic study to be retained and included in this thesis. Several measures unrelated to either

NEWQOL or SANAD were also added to the questionnaires at this point.

As mentioned in 6.7 this study of patient psychosocial characteristics was seen as

complementary to the clinical assessments of the First Seizure Clinic. At the time the

current study was established a new First Seizure Clinic clinical database was being

developed and it was anticipated that this information could be linked with the psychosocial

outcomes for the purpose of this thesis. However, the clinical database was delayed and

consequently this did not occur.

For the purpose of this thesis only a subset of the measures utilized in the First Seizure

Clinic study was ultimately selected for analysis because it became apparent there was

overlapping of measures. The selected measures are listed in Table 2 with detailed

explanations following (7.2.10). The questions are provided in full in appendix E.

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Table 2. Outcome measures – summary table

Measure Derived from Items Scale definitions

Age Author, 2001 1 item Checks exact age from history

Gender Author, 2001 1 item Records gender using a dichotomous measure

Residential setting

Author, 2001 1 item Assesses who patient lives with using a 7-point measure

Education Author, 2001 1 item Records educational status using a 6-point measure

Occupational status

Author, 2002 1 item Records occupational status using a 6-point measure

General health scale Ware, 1993 1 item Assesses perception of general health using a 5-point Likert scale from excellent to poor

Global quality of life (GQoL) scale

Andrews & Withey, 1976

1 item Assesses overall QOL using a 7-point visual analogue scale, with seven faces from very happy to very sad

Worry scale Jacoby, 1992, 2000

2 items Measures the extent of seizure/blackout-related worry, past and future using 4-point Likert scales

Hospital Anxiety and Depression Scale (HADS)

Zigmond & Snaith, 1983

14 items: 7 anxiety 7 depression

Identifies clinical cases of anxiety and depression using a 4-point Likert scale of intensity and frequency

Perceived stigma scale

Jacoby, 1994 3 items Assesses patient-perceived level of stigma associated with condition using a 4-point Likert scale

Liverpool Adverse Events Profile (LAEP)

Baker et al., 1993, 1994, 1995

19 items Measures patients’ perceptions of possible AED related symptoms using a 4-point Likert frequency scale. (expanded to 23 items for data collection and collapsed to 19 for analysis)

Health information sources

Author, 2002 13 items Assesses sources of information about seizures/blackouts using a checklist and a 3-point Likert scale to assess perceived helpfulness

Clinic service – service satisfaction scale

Author, 2002 8 items Assesses patients’ perceptions of the clinic service using a 4-point Likert scale

Clinic service – open-ended questions

Author, 2002 1-3 items Assesses patients’ general opinions of the clinic service using open questions

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7.2.10.2 Demographic measures

Age and gender were recorded at baseline. In addition, participants were asked about their

residential setting, i.e. with whom did they live. A checklist of seven answer options included

living alone, living with a partner, and living with friends. The highest level of education

was recorded using a checklist of six options covering primary to degree level. Occupational

status was also assessed using a checklist of six options: full-time employment, part-time,

employment, full-time home duties, retirement, student, and not employed.

7.2.10.3 General health scale

The general health question originated from the SF-36 Health Survey; a generic health

status measure (McHorney, Ware, Lu, & Sherbourne, 1994; Ware, 1993). Patients are asked

to assess their perception of their overall health on a 5-point Likert scale, ranging from 1=

excellent to 5 = poor. This single question from the SF-36 has been integrated into several

epilepsy research questionnaires which endeavour to utilize well-tested generic measures

into the design of a condition-specific measure (Fitzpatrick et al., 2006), for example,

NEWQOL (Abetz et al., 2000; Jacoby, 1992, 1994), QOLIE-89, -31, and -10 (Fitzpatrick et

al., 2006), and SANAD (7.2.10.1).

In the current study the measure was treated as a continuous scale and data recoded with

high scores representing a high level of general health. The scale was tested for statistical

normality and found to be satisfactory (8.2.2).

7.2.10.4 Global quality of life scale

A visual analogue scale was used as a single-item overall measure of global quality of

life (GQoL). The selected measure replicated that utilized in the SANAD questionnaire

(7.2.10.1). Based on Andrews and Withey’s work (1976), the scale has been incorporated into

epilepsy batteries developed by the Liverpool research team as it was considered to be in

line with recommendations by Gill and Feinstein (1994) that a single global QOL measure

is a useful inclusion in QOL research (Baker et al., 2001). The question asked ‘…taking

everything together, which of the faces below shows best how you feel about life as a whole’.

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Using seven faces ranging from very happy through to very sad, participants were asked to

indicate the face which best showed their feelings. A high score indicates a higher perceived

GQoL.

There has been debate as to whether a single-item assessment of QOL can provide

information of value, however, there is strong opinion that depending on the research

objectives, and where only a global impression of QOL is sought, that a single-item may well

be adequate (Sloan, Aaronson, Cappelleri, Fairclough, & Clinical Significance Consensus

Meeting Group, 2002). The scale was tested for statistical normality and found to be

satisfactory (8.2.2).

7.2.10.5 Worry scale

The worry scale was designed by Jacoby to assess the extent of epilepsy-related worry,

both past and future (Abetz et al., 2000; Jacoby, 1994; Jacoby et al., 2007). The 4-point

Likert scale ranges from 1 = very worried to 4 = not worried at all. When utilized in the

NEWQOL questionnaire the worry questions asked about seizures/fits, not epilepsy. This

was an attempt to relate effectively to the needs of a patient group who were experiencing

new-onset seizures, rather than well established epilepsy (Abetz et al., 2000). The more

recent SANAD study questionnaire varies the wording of the question, using the term

‘attacks’. In the Australian research setting of the current First Seizure Clinic study, the term

seizures/blackouts was preferred, as this was considered by the clinic staff to be the most

common terminology used with patients in this setting.

The SANAD study also enlarged the past worry question (from that used in NEWQOL). It

was expanded to include worry about any associated injuries and/or medication side effects.

This First Seizure Clinic study followed that style. In the First Seizure Clinic study the

worry questions were treated as continuous scales and recoded with high scores reflecting a

high level of worry. The scale was tested for statistical normality and found to be satisfactory

(8.2.2).

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7.2.10.6 Hospital Anxiety and Depression Scale

The Hospital Anxiety and Depression Scale (HADS) is a self-report measure of anxiety

and depression developed for use in a hospital outpatient setting (Zigmund & Snaith,

1983). It contains 14 items rated on a 4-point Likert scale with two subscales of seven items,

which separately measure anxiety and depression symptoms during the previous week. To

calculate scores some items are reversed so that high levels of anxiety or depression are

related to high total scores. The possible total score for each subscale ranges from 0–21. The

scale developers advise that scores of 11–21 indicate a possible clinical case of anxiety or

depression. Scores of 8–10 are considered borderline cases, and scores of 0–7 are considered

non-cases. Although originally designed for use as a categorical measure, some published

results have also used the scale as a continuous measure (Smith et al., 1991; Spinhoven et al.,

1997). In a review of validation data and clinical results Herrmann (1997) found the HADS

to be a reliable and valid instrument for assessing anxiety and depression in medical patients.

He noted that HADS depression scores had been found to predict quality of life, and

compliance, and HADS anxiety scores found to predict physical symptoms. Bjelland, Dahl,

Haug and Neckelmann (2002) also carried out an extensive literature review concluding

that the HADS performs well in assessing symptom severity and caseness of anxiety and

depression in samples from the general population, general practice and psychiatric patients.

In epilepsy, the HADS has been often utilized in psychosocial research (Baker, Hesdon,

& Marsden, 2000). For use in the First Seizure Clinic research project the use of HADS

followed the work of the Liverpool epilepsy research team, using the HADS wording

(appendix E) as it had been presented in the SANAD study. The wording of some questions

in that study was slightly modified from the original HADS and for the current thesis

recoding was considered necessary for item j, to prevent increasing the depression score by 1.

The scale was tested for statistical normality and found to be satisfactory (8.2.2).

7.2.10.7 Stigma scale

The perceived stigma scale is based on a scale developed for use in stroke patients (Abetz

et al., 2000; Hyman, 1971; Jacoby, 1992, 1994; Jacoby, Baker, Steen, & Buck, 1999; van

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Brakel, 2006). Designed to assess patient levels of felt, or perceived, stigma the 3-item scale

asks patients whether because of their epilepsy, they feel other people are uncomfortable

with them, treat them as inferior, and prefer to avoid them. Originally designed with a

dichotomous response the scale was later adapted for use as a 4-point Likert scale, with

response options ranging from 1= not at all, to 4= yes definitely. The scale has been

included in several epilepsy research projects including the SANAD project. In the current

study the measure followed the wording of the SANAD follow up study questionnaire using

the word ‘condition’ rather than seizures/fits (as in NEWQOL), or attacks (as in SANAD

baseline); the current study included participants who were under investigation for a possible

seizure prior to a final diagnosis and therefore, the word ‘condition’ was more appropriate

for all participants. The scale was treated as continuous, and after recoding was scored from

0–9 with higher scores reflecting higher perceived stigma. The scale was tested for statistical

normality and found to be satisfactory (8.2.2). To estimate the percentage of patients

reporting perceived stigma, all those who scored 1 or above were included. This method was

advised by the scale designer A. Jacoby (personal communication, January 15, 2008).

7.2.10.8 Liverpool Adverse Events Profile

The Liverpool Adverse Events Profile (LAEP) is a patient-reported 19-item scale designed

to assess patient perceptions of possible adverse effects, such as cognitive impairment or

negative physical changes, related to the use of AEDs (Abetz et al., 2000; Baker et al., 1993;

Baker et al., 1994; Baker et al., 1995; Jacoby et al., 1999). The scale introduction (NEWQOL

and SANAD) does not specifically ask the patient to assess the effects of the AEDs,

rather it asks them to assess the extent to which they are experiencing a series of physical

and psychological symptoms. The symptoms, which are usually considered indicative of

AED adverse effects, include unsteadiness, shaky hands, hair loss, weight gain, sleepiness,

concentration difficulties, and depression. Responses are recorded using a 4-point scale,

ranging from 1 = never a problem to 4 = always a problem. Results can then assessed by

examining the frequency of particular symptoms (Jacoby et al., 1999). The scale designers

did suggest in an early paper that summation of the scores might disguise the adverse effects

of individual drugs (Jacoby et al., 1999). Nevertheless in subsequent studies it has been

common for the results of individual items to be summed as a global score (Gilliam et al.,

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2004). The total possible score ranges from 19 = no symptoms reported, to 76 = maximum

reporting. The LAEP (more recently referred to as AEP (Jacoby et al., 2007) has been used

in a range of epilepsy research settings (Baker et al., 1997; Baker et al., 2001; Gilliam et al.,

2004; Jacoby et al., 2007; Wiebe, Eliasziw, & Matijevic, 2001).

For this current research project the LAEP was modified. Two items were expanded and

one new item was added bringing the total of items to 23. This allowed for the additional

effects of newer drugs, released since the development of the scale. The changes were as

follows: the item ‘upset stomach’ was expanded to 3 separate items (nausea, diarrhoea,

constipation) and the item ‘problems with skin’ was expanded to 2 separate items (problems

with rash, problems with acne). One item was added (weight loss). In the final statistical

analysis, weight loss was excluded from the total and the expanded items were averaged and

collapsed back into the original item, thus allowing for comparisons with external studies

where LAEP was used in its original form. The scale was tested for statistical normality and

found to be satisfactory (8.2.2).

7.2.10.9 Health information sources

The health information questions were designed to assess where First Seizure Clinic patients

obtained information about seizures/blackouts. The questions were developed by the

author for the current study. Thirteen possible sources of information were listed including,

for example, family and friends, general practitioner, internet, EEG staff, library, and the

Epilepsy Foundation of Victoria. Patients were asked to check the box next to any source of

information they used and to then circle 1= very helpful, 2 = helpful or 3 = not helpful. The

frequency of use was graphed for visual inspection and comparison.

7.2.10.10 Clinic service – service satisfaction scale

Of the self-reported questionnaires generally available for the patient assessment of health

service provision, none were identified which would gather the data required for the First

Seizure Clinic research project. Existing scales often focus on the tangible experience of a

clinic such as waiting times, comfort etc., rather than on the patients’ emotional reactions

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to the service they received. As recently as 2006 a UK based review of such patient

reported measures in relation to chronic disease, carried out by the National Centre for

Health Outcomes Development, noted that of the measures assessed, no single measure

was considered appropriate to recommend for this purpose (Fitzpatrick et al., 2006).

Consequently, for the current study, the author developed a set of eight 4-point items to

assess patient levels of satisfaction with: access to information, consideration of individual

needs and participation in the decision making process in the clinic. Each item was

written as a statement with possible responses to the statements ranging from 1= strongly

agree to 4= strongly disagree. The questions were designed to be suitable for all patients,

regardless of diagnosis or RCT study group, and to highlight possible differences between

the RCT control and intervention group responses. For example, ‘I am satisfied with my

understanding of the diagnosis’ or ‘I have joined in the decision making about my health

care’. The questions aimed to encourage honest responses by shaping questions as far

as possible so that patients did not feel negative answers would be seen as a criticism of

their doctor. The measure was treated as a continuous scale with scores from 4–32. After

recoding, higher scores represent a higher level of satisfaction. The scale was tested for

statistical normality and found to be satisfactory (9.3.1).

7.2.10.11 Clinic service – open-ended questions

Open-ended questions at three months (three questions) and twelve months (one question)

were designed to offer participants an opportunity to express their opinion on the quality of

clinic care, using their own words. At three months participants were asked to comment on

what were the most helpful and least helpful features of the clinic, followed by an invitation

to make general comments or suggestions about the clinic. At twelve months just a single

question provided an opportunity for participants to offer general comments.

The written answers to the open-ended questions were recorded into an Excel database

for further examination. Major themes were isolated and examples presented to enrich the

quantitative analyses.

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7.3 A Randomized Controlled Trial to assess a support program in First Seizure Clinic patients

To test an intervention providing patient support, a randomized controlled trial (RCT) was

nested within the study of FSC patients. An RCT is described by the NHMRC (2000) as

follows:

Subjects are randomly allocated to groups either for the intervention/treatment being studied or control/placebo (using a random mechanism, such as coin toss, random number table, or computer generated random numbers) and the outcomes are compared (p. 7).

The design aims to minimize the possibility of systems bias between groups and to ensure

that the groups being compared are as alike as possible except for the intervention. When

well-designed and conducted, such trials are considered to be the best source of evidence for

effects of interventions. (NHMRC, 2000).

Much of the credibility attributed to the RCT has been earned through trials carried out

under strictly controlled conditions ( Helms, 2002) and despite its reputation as the ‘gold

standard’ for trial design in scientific research, the RCT is coming under increasing scrutiny

for its suitability to answer research questions raised in the complexity of day-to-day medical

practice and public health interventions (Kaptchuk, 2001; Stolberg, Norman, & Trop,

2004). The rigorous framework of an RCT means that trials are often carried out in very

selected population subgroups in order to reduce the number of variables which need to be

considered in analysis, such as gender or age. Participants may be excluded from trials due to

the presence of comorbidities or existing treatments. Therefore, results from such trials may

not provide adequate information about how well a treatment will work when applied to a

more general community sample (Helms, 2002).

As expected, the decision to include an RCT in the First Seizure Clinic setting presented

some theoretical and logistical challenges. Testing the effect of a patient support service

within a clinic is more complicated than a comparison between a medication and placebo.

The intervention triggers complex interactions between the patients and the service

providers; the service is tailored to the individual, and the patient’s response to the

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intervention affects the style, and sometimes the content, of the intervention itself. In

addition it is unlikely and unreasonable to expect a single outcome measure to provide

an effective evaluation of such a program (Rychetnik, Frommer, Hawe, & Shiell, 2002).

Bearing this in mind, and considering that for research evidence to be well regarded and

utilized in policy development, a study needs to maximize its relevance, credibility, and

acceptability. The design of this study was structured as a pragmatic, randomized controlled

trial (Godwin et al., 2003).

The pragmatic RCT evolved where drug trials were trying to model real world clinic

settings, with their varied patient circumstances and the therapeutic choices faced by

clinicians in everyday practice (Helms, 2002). This approach is considered by some to be

a realistic compromise between the internal validity of the RCT and the need for good

external validity (Hotopf, 2002; Godwin et al., 2003). Whereas the RCT as an explanatory

or causal trial seeks to maximize internal validity by working under ideal conditions,

assuring rigorous control of all variables other than the intervention, the pragmatic RCT

seeks to maximize external validity by testing a treatment policy in a ‘real life’ situation with

results that could be generalized (Godwin et al., 2003). In the current study for example,

exclusions were minimal and comorbidities such as anxiety and depression did not prevent

participation. Such issues will be present in any community sample with or without epilepsy

but the randomization process for the two study groups will maximize the chance that the

two groups will not differ on key variables (including pre-existing conditions) at pre-test.

7.3.1 Randomization

The allocation of patients to intervention or control groups was a randomized, but

unblinded process. Patients were invited to join the study strictly in order of their arrival

at the clinic. Each consenting patient was then added to the next vacant position on the

randomly generated computer list, which designated the patient as a member of either

the control or intervention group. The research team was therefore not blinded to the

randomization process; however, there were logistical considerations which influenced this

choice. Working with a computer-generated list meant that, at times, there could be three

or four intervention patients scheduled in a row, or the same number of non-intervention

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patients. A large number of intervention patients in one clinic session required two support

workers in order to provide the intervention to both consulting rooms at once, and to keep

the clinic flowing smoothly. By looking ahead on the computer generated list the need for

additional staff could be anticipated and rosters planned accordingly.

The randomization process faced a severe logistical challenge towards the end of the project

when there was a restriction placed on the number of support workers available to attend the

clinics. With only one support worker available at any time this introduced a serious risk that

the quality of the intervention would be affected if the computer randomization continued.

For example, where clusters of intervention patients occurred together on the randomized

list, two things could happen. Firstly, a single worker could not attend consultations which

occurred simultaneously. Secondly, there would be a need to cut short the post-consultation

discussion time with some patients in order to move on to the next patient, otherwise

doctors would be kept waiting between patients and the smooth flow of patients through the

clinic would be compromised. A decision was made to continue by allocating patients to the

groups on an alternating basis, rather than continuing with the computer generated list. This

process is not theoretically ideal as there is a possible risk of systematic bias. Nevertheless, in

these circumstances it was considered acceptable and preferable to risking the integrity of the

intervention. A study which used alternate allocation is technically referred to as a pseudo

(or quasi) randomized trial (NHMRC, 2000). Although this terminology may not always

be applied to such studies, it is technically correct and aligns with the design descriptors

endorsed by the Cochrane Collaboration (Higgins & Green, 2008).

7.3.1.1 Doctor blinding

The inclusion of a support person in the medical consultation made it impossible to blind

doctors as to whether patients were assigned to the control or intervention group. However,

this non-blinding reflects the reality of everyday practice in the First Seizure Clinic. Where

the doctors know that additional support is available to the patient, rather than attempting

to be the sole providers of information, they can share the role of information provision

with the support workers. Conversely if patients are not provided with any additional

support the doctors will need to ensure that they provide all necessary information to

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patients themselves. Timing the length of consultations was initially proposed to measure

any difference between the amounts of time the doctor might give to control patients as

opposed to those in the intervention group. However, this proved too difficult to monitor in

the day-to-day working of the clinic and was not pursued.

7.3.1.2 Patient blinding

It was considered important, as far as possible, to blind the patients as to how support

strategies would vary between individuals. Therefore, although the study information

sheet explained that the study was attempting to identify the best methods of providing

information and support, it did not specify that there would be a control and intervention

group. It was felt that if patients identified themselves as being in either group this could

influence their assessment of the service and responses to questions. Although individual

patients would obviously know if a support worker spoke to them during the consultation,

this would not necessarily indicate to them how their experience of the clinic might differ

from other patients. Such an approach was considered acceptable given the nature of the

study and that fact that it is not known whether either approach confers a benefit to patients.

Participation in either group was not considered to put patients at any risk and all ethics

committees approved the protocol.

7.3.2 Control group protocol

The control group protocol was based on the provision of usual care. According to usual

clinic practice, all patients in the control group met with the doctor who took a medical

history, carried out a physical neurological examination, and advised the patient as to

the likely diagnosis. If the diagnosis was seizure or epilepsy the doctor concluded the

consultation by giving the patient a card outlining the support services of the Epilepsy

Foundation of Victoria (EFV). The provision of this information, although occasional

practice within some seizure clinics, is considered to be above the level of usual care in

Australia.

Ethical considerations required the study design to avoid any negative consequences for

patients in the control group and, considering the fact that evidence supporting the benefit

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of such programs is lacking, the randomized controlled design was considered acceptable.

However, prior to the study it had been the practice of First Seizure Clinic doctors who

came across a patient in extreme difficulties due to their diagnosis at the clinic, to call on

the EFV workers for assistance. For example, a patient may have driven to the clinic and

find themselves under instructions to cease driving immediately. In designing the study it

was agreed by all stakeholders that any support service which the doctor deemed extremely

necessary would be provided to control group participants. Such actions could exert a

possible positive influence on those control participants affected, thereby lessening any

positive effect of the intervention. However, these cases were expected to be rare and it was

proposed that regardless of these protocol exceptions, the data would be analyzed on an

intention to treat basis and all participants would be analyzed in the groups to which they

were originally allocated.

7.3.3 Intervention group protocol

7.3.3.1 Overview

All patients in the intervention group met with a doctor accompanied by the rostered

support worker. According to usual clinic practice the doctor took a medical history, carried

out a physical neurological examination, and advised the patients as to the likely diagnosis.

At the end of the consultation additional time was provided for the patient to discuss the

diagnosis with the support worker privately (or with the inclusion of family and friends

if preferred), regardless of whether a seizure had been confirmed. The support worker

provided the patient with a mobile phone contact for future use if necessary and also made

two follow up calls to the patient at two and six weeks after the initial contact.

7.3.3.2 The support workers

Both support workers were employees of the Epilepsy Foundation of Victoria (EFV). One

was male aged in his mid-forties and the other female aged in her mid-thirties. They had

been diagnosed with epilepsy some years earlier and had both subsequently undergone

successful epilepsy surgery. Both had been employed in other areas prior to taking up

positions with the EFV. One had worked for many years as a manager in a service industry,

while the other had been, most recently, a personal care attendant.

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Prior to the commencement of the study both individuals had been acting in a voluntary

capacity as clinic peer support workers (providing support on the basis of their personal

experience). Initial training by EFV in that period had provided an introduction to epilepsy

support work, an overview of clinic operations, and a strong one-to-one mentoring program

by an EFV health professional to induct the workers into the organization’s operations and

the clinic environment. After becoming paid employees in the early days of the study they

continued to participate in training for epilepsy support work facilitated by EFV, and also to

undertake a diploma in solution-oriented counselling.

Although both workers were provided with an ongoing range of training opportunities, in

line with the agency’s philosophy they were permitted, and in fact encouraged, to include

references to their own personal experience as epilepsy patients when working with clients.

This was valued by the agency as another layer of expertise, which they could bring to their

work. Consequently the workers could be defined as peer support workers; although the

training and experience they had acquired as EFV staff meant that they would be qualified

to act as support workers with or without their personal epilepsy experience (EFV, 2003).

7.3.3.3 The first consultation

The support workers sat in on the medical consultations for all intervention patients and

were introduced to the patient by the doctor as the worker from the Epilepsy Foundation of

Victoria. The presence of the worker at the initial consultation served to reassure the doctor,

the patient, and the worker, that the worker involved was correctly informed about the

patient’s history, the reasons behind the diagnosis, and the proposed course of action.

At the conclusion of the consultation, the support worker would speak privately with the

patient and provide additional relevant information both verbal and written. Any questions

which the patient might have were discussed and the support worker’s mobile phone

contact number was given to the patient. If at anytime between clinic visits the patient had a

question about their condition, or the clinic service, they could call that number. The family

and friends of patients were also included in this meeting where the patient was comfortable

to do so.

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7.3.3.4 Maintaining consistency

In the pursuit of a research agenda, the patient support sessions had to provide, as far

as possible, a consistency of service. However, because each patient, doctor and support

worker was unique, the needs and experience of each patient would vary. The support

service provided by the workers had to be tailored to each individual encounter, bearing in

mind the diagnosis, personality and social circumstances of each patient (Andrewes, Camp,

Kilpatrick, & Cook, 1999).

To promote consistency therefore, a checklist of discussion issues was created, drawing

on the prior clinic experience of the support workers (appendix F). It was agreed that

at each meeting while approaching the patient as a unique individual with their own

particular questions and issues to discuss, the checklist would be used as a guide to ensure

all appropriate key areas were covered with every patient. (7.3.3.5). Key issues included the

diagnosis and treatment of seizures, medication, driving, employment and safety.

As discussed above (7.3.3.2), the support workers encompassed a blend of personal epilepsy

experience as well as broader counselling skills. Their personal experiences provided

them with good insights into the issues faced by the patients and served to inform their

counselling. However, the inclusion of personal anecdotes by a peer support worker while

often valuable is, as with any information provided in such circumstances, a matter that

requires careful judgement considering the unique requirements of each patient receiving

the support service. For the purpose of the current study it was agreed that although the

nature and amount of any anecdotal personal experience provided could be varied according

to the situation (which is the usual practice for these epilepsy counsellors) as a minimum

requirement for this study both workers would tell every intervention patient they met that

they had personal experience of seizures. Whether that aspect of discussion went further

would depend (as is the usual case) on the level of patient interest.

In addition to these protocols each worker spent several sessions, early in the study,

observing the interview techniques of the other in order to promote the adoption of a

common style.

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7.3.3.5 Educative materials

A core package of educative literature was selected after discussion between the researcher

and the support workers (appendix G). Where there were changes in the availability of

brochures during the project, the core list was adapted to reflect these changes. One

significant change was the completion of a brochure designed especially for First Seizure

Clinic patients, which stepped the reader clearly through the diagnostic process. This was

introduced to the core package in May 2003 (appendix A).

Although there was an agreed core of educative material to promote consistency in the

program, the needs of the individual patients were always the focus of the support workers.

Consequently, the workers could also draw on any additional material they felt would be

advantageous to their client.

7.3.3.6 Follow up calls

At the initial clinic meeting the support worker explained to the patient that their progress

would be checked by phone over the following weeks. Subsequently, the workers made a call

to each intervention patient at two and six weeks. The purpose of the call was to check on

the patient’s well-being and to provide an opportunity for the patient to ask any questions

which may have arisen for them since their visit to the clinic. If patients could not be

contacted by phone a letter was sent.

7.4 Statistical analysis

The analysis of the study data was carried out with the Statistical Package for Social Sciences

(SPSS). Tests of significance of group differences were made with the Chi-square test for

categorical variables and one-way analysis of variance (ANOVA) for continuous variables.

Repeated measures ANOVAs were utilized to assess longitudinal change in outcome scores,

with mixed between-within subjects ANOVAs used to test for variations in change over

time between subgroups.

In chapter 10 multiple regression analysis was performed to attempt prediction of LAEP

scores from anxiety, depression and drug status, and one-way multivariate analyses of

124


variance (MANOVA) was used to investigate differences in the reporting rates of the 19

LAEP symptoms by levels of both anxiety and depression

7.5 Summary

Chapter 7 has presented the methodology underpinning this thesis, beginning with an

overview of the research design, the setting, and the method of recruitment. Participants

were recruited from two First Seizure Clinics just prior to their first consultation resulting

in a mixed cohort of both seizure-related and non-seizure related diagnoses. After

discussing the characteristics and benefits of this mixed cohort, this chapter has provided an

explanation of the data collection process and the selected outcome measures.

The outcomes measures were selected to suit the First Seizure Clinic setting, where

patients were referred for early investigation of a possible new-onset seizure. As a number

of the patients ultimately received a non-seizure diagnosis and of those with a confirmed

seizure not all were classified as epilepsy cases, the research questions had to be carefully

constructed and worded to suit all participants. With few examples of such research from

which to draw validated measures, the work of the Liverpool research group appeared

to offer the most suitable options. Having used the battery approach to design research

questionnaires over some time, the group had also begun to mix and match tested

measures, rewording them where necessary, for use with newly diagnosed patients in large

international studies. Consequently the First Seizure Clinic questionnaire adopted a number

of these measures. In addition, several new measures were created for the project.

To evaluate the effect of a patient support program in newly diagnosed seizure patients,

a randomized controlled trial was nested within this study. Best described as a pragmatic

pseudo randomized controlled trial, the rationale and protocols for the study have been

presented in detail. To complete the chapter, the methods of statistical analysis for the study

were briefly outlined.

The next section of the thesis will put forward the research results over three chapters.

Chapter 8, will begin the results with a presentation of a prospective evaluation of the First

Seizure Clinic patients over twelve months.

125


Chapter 8

Results 1: A prospective evaluation of First Seizure Clinic patients over 12 months

8.1 Introduction

Chapter 8, as the first of three results chapters for this thesis, presents the data collected for a

12-month prospective evaluation of First Seizure Clinic patients. It begins with a discussion

of the data management and a preliminary analysis of the eight key variables of interest in

the evaluation. These measures are designed to assess psychosocial outcomes and symptoms

of possible medication side effects (8.2). Then follows a description of the cohort at baseline

using the demographic data. This data is also examined for differences between the four

diagnostic categories (epilepsy, seizure, syncope, and other) (8.3). The variables are examined

at baseline, checking for any possible influence of age and gender, after which the baseline

scores for these variables are compared by diagnostic category (8.4). The longitudinal

outcomes of psychosocial variables for the full cohort over twelve months are evaluated,

and this analysis continues with a comparison of the outcomes between the four diagnostic

categories (8.5). Finally, the correlations between key outcome variables are assessed (8.6)

and the chapter concludes with a summary of the findings and a preview of chapter 9 (8.7).

8.2 Outcome measures

The eight variables under discussion in this chapter are perceptions of general health, a

single-item global measure of quality of life (GQoL), past worry about seizures/blackouts,

future worry about seizures/blackouts, anxiety and depression (measured using the Hospital

Anxiety and Depression Scale – HADS), perceived stigma, and symptoms of possible

adverse effects of antiepileptic drugs (AEDs); assessed with the Liverpool Adverse Events

Profile (referred to generally as LAEP, and in recent publications (Jacoby et al., 2007) as

Adverse Events Profile (AEP) ). Detailed descriptions of the scales selected to measure these

variables can be found earlier in this thesis in chapter 7, where the methodology of this

project is presented (7.3).

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8.2.1 Preliminary analysis of data

All data for statistical analysis were entered into the Statistical Package for the Social

Sciences (SPSS) for Windows and screened for errors in data entry which, when discovered,

were checked against the original questionnaires and corrected (Pallant, 2001). These data

were then assessed for missing values and the demographic data were found to be complete,

with the exception of three missing responses for the residential setting question. These

missing values were not replaced, so as to avoid inaccurate estimation. The psychosocial

variables that consisted of single-item scales were each found to have only random missing

data at a rate ranging from approximately 1% to 3%. These data were not replaced. In the

multi-item psychosocial scales where a case was missing more than 15% of the required data,

all data for the scale of that case were treated as missing. This was a very rare occurrence. In

these multi-item scales all other missing data, which appeared to be random and minimal,

were replaced with mean substitution (Tabachnick & Fidell, 1996).

When reading the results of this investigation, it is important to note that there are some

variables with fewer responses available for analysis. This is primarily due to the later

introduction of several measures into this study. In chapter 8 these variables are the GQoL

scale and the perceived stigma scale.

8.2.2 Statistical normality

The frequency distributions of the eight variables for analysis in chapter 8 were scanned

for univariate outliers using the SPSS Explore function (Pallant, 2001). Inspection of the

statistics and the trimmed means indicated that no outlying values were exerting undue

influence on the mean scores. The score range, mean, standard deviation, skew, kurtosis

and Cronbach alpha coefficients (where appropriate) for the variables are presented in Table

3. All scales met assumptions of normality in terms of skewness and kurtosis (Tabachnick

& Fidell, 1996). The Cronbach’s alpha coefficient was greater than .81 for all the multi-item

scales, indicating acceptable internal reliability (Pallant, 2001).

127


Tabl

e 3.

FS

C –

scor

e ran

ge, m

ean,

stan

dard

dev

iation

, ske

wness

, kur

tosis

and

alpha

coeffi

cient

Base

line

3-m

onth

s12

-mon

ths

Varia

ble

Scor

e ra

nge

NM

ean

SDSk

ewK

urto

sisA

lpha

NM

ean

SDSk

ewK

urto

sisA

lpha

NM

ean

SDSk

ewK

urto

sisA

lpha

Gen

eral

Hea

lth1-

524

33.

42 0

.96

-0.1

8 -0

.31

N/A

156

3.44

0.8

80.

11-0

.67

N/A

108

3.5

9 0

.81

0.02

-0.4

9N

/A

GQ

oL1-

7 1

93 4

.83

1.4

8 -0

.49

-0

.27

N/A

135

4.9

9 1

.53

-0.5

6 -

0.21

N/A

106

5.2

0 1

.33

-0.4

7

-0.2

7 N

/A

Past

wor

ry1-

424

32.

58 1

.04

0.0

8-1

.20

N/A

155

1.91

0.9

10.

82-0

.08

N/A

107

1.8

00.

870.

83-0

.15

N/A

Futu

re w

orry

1-4

243

2.66

1.0

8-0

.10

-1.2

9N

/A15

82.

09 0

.97

0.72

-0.3

5N

/A10

7 1

.92

0.9

00.

80 -0

.07

N/A

HA

DS

anxi

ety

0-2

124

57.

20 5

.07

0.5

5 -

0.44

.88

156

6.65

5.0

20.

52-0

.47

.90

109

5.9

1 5

.02

0.72

-0.4

9.9

0

HA

DS

depr

essio

n 0

-21

245

4.78

4.1

1 0

.91

0.1

2.8

215

64.

59 4

.14

0.80

-0.0

5 .

8410

9 3

.83

3.9

60.

99 0

.06

.86

Perc

eive

d st

igm

a 0

-919

71.

64 2

.46

1.65

1.9

1.8

713

81.

62 2

.32

1.44

1.5

0 .

9010

9 1

.36

2.2

41.

66 1

.84

.91

LAE

P19

-76

244

37.7

611

.14

0.35

-0.5

4.9

115

636

.93

11.0

00.

15 -

0.63

.92

109

34.7

910

.95

0.3

7-0

.89

.92

FSC

, Firs

t Sei

zure

Clin

ic; G

QoL

, Glo

bal Q

ualit

y of

Life

; HA

DS,

Hos

pita

l Anx

iety

and

Dep

ress

ion

Scal

e; L

AE

P, L

iver

pool

Adv

erse

Eve

nts P

rofil

e

128


8.3 Descriptive data

8.3.1 Overview of cohort

The cohort for this study is a sample of individuals who attended a First Seizure Clinic.

As previously noted, although all patients were referred for investigation of a possible

first seizure, not all were ultimately diagnosed as epilepsy or seizure patients (7.2.1–7.2.8).

Consequently the sample represents a unique population and the specific characteristics of

the cohort must be considered when assessing or comparing the results provided.

As detailed in chapter 7 (7.2.8) the total cohort at baseline numbered 245. The mean

recruitment age of the cohort was 36.5 years (±15.9), and 65% were male. Social background

measures at baseline indicated that, on assessment of residential setting, 17% of the cohort

lived alone and 37% lived with a partner. Of the couples, 25% had children living with them.

The remainder of the cohort (46%) lived with others such as parents, friends or children.

The percentage of the sample that had completed post secondary education or training

was 45%, of whom 43% had completed a degree. The percentage of the sample that had

not completed any post secondary education was 55%. Of these 5% had attended only

primary school, 41% had not completed their secondary schooling, and 54% had completed

secondary school.

Employment data were available for 80% of the cohort. Of these people, 48% were employed

full time and 12% were employed part time. The remainder was made up of students (9%),

retired people (10%), and individuals who were classified as not employed (21%).

8.3.2 Participants withdrawn or lost to follow up

Strenuous efforts were made to maximize the retention of participants, and the strategies

for follow up have been described in chapter 7 (7.2.9). Nevertheless over twelve months,

from the original baseline cohort of 245 participants, there were 11 withdrawals where

patients preferred not to continue with the study. In addition there were 125 participants

129


lost to follow up. In this combined group (N = 136), the average recruitment age was 33.9

(± 13.9), just a little lower than the recruitment age of the total First Seizure Clinic cohort at

baseline (8.3.1). The gender distribution, and the distribution of diagnostic categories for the

withdrawn/lost to follow up group was very similar to the total First Seizure Clinic cohort

(8.3.1, 8.3.3), with 63% males and diagnostic categories of epilepsy 33.8%, single seizure

34.6%, syncope 13.2% and other 18.4%.

Two patients with a seizure-related diagnosis, and counted as lost, were confirmed to have

died within 12 months of enrolment in the First Seizure Clinic study. One suffered a seizure

at home and after transfer to hospital did not recover. The other was pronounced dead on

arrival at hospital with no cause of death available. It is possible that other patients who were

lost to the study may have died. This information was not available to the current study.

*Exclusions N=13*Refusals N=39

First Seizure Clinic recruitment: Nov 2001 – August 2004Patients with no prior known epilepsy N = 297

Baseline [B/L] enrolments N = 245

EpilepsyN=85

[34.7%]

SeizureN=82

[33.5%]

SyncopeN=33

[13.4%]

OtherN=45

[18.4%]

3 month response N=158 [64% of B/L]

EpilepsyN=57

[36.1%]

SeizureN=50

[31.6%]

SyncopeN=26

[16.5%]

OtherN=25

[15.8%]

12 month response N=109 [44% of B/L]

EpilepsyN=39

[35.8%]

SeizureN=35

[32.1%]

SyncopeN=15

[13.8%]

OtherN=20

[18.3%]

B/L to 3 months†Withdrawn N=7†Lost N=80

3 –12 months†Withdrawn N=4†Lost N=45

B/L to 12 months†Total Withdrawn or Lost N=136

Figure 1. First Seizure Clinic study framework flowchart

* Exclusions and refusals are detailed in Chapter 7 (7.2.8.1)† Withdrawal and loss are discussed in Chapter 8 (8.3.2)

130


8.3.3 Diagnostic categories

As detailed in chapter 7 (7.2.8.2), study participants were divided into four diagnostic

categories for analyses. The framework of the study is presented as a flowchart in Figure 1.

At baseline, there were no statistical differences between the diagnostic groups for

residential setting (Chi-Square (6) = 7.17, p > .05), level of education (Chi-Square (12) = 11.00,

p > .05), or employment status (Chi-Square (6) = 9.65, p > .05).

The recruitment age and gender of participants remaining at each time point are

summarized in Tables 4 and 5. There were no significant differences between the mean

recruitment age of the diagnostic groups at baseline [F(3,241) = .632, p > .05], at three

months [F(3,154) = .441, p > .05], or at twelve months [F(3,105) = .651, p > .05]. However,

there was a trend for the mean recruitment age to increase in all diagnostic categories,

suggesting that younger participants were more likely to drop out of the study.

Diagnosis Baseline 3-months 12-months

N Mean Years (SD) N Mean Years (SD) N Mean Years (SD)

Epilepsy 85 35.8 (15.8) 57 37.2 (15.8) 39 38.1 (17.2)

Seizure 82 36.0 (16.0) 50 37.4 (18.4) 35 38.7 (18.1)

Syncope 33 40.1 (18.4) 26 41.5 (18.4) 15 45.3 (22.3)

Other 45 36.2 (14.1) 25 38.9 (15.2) 20 40.6 (14.0)

Total 245 36.5 (15.9) 158 38.2 (16.9) 109 39.7 (17.7)

Table 4. FSC Diagnostic Categories – mean recruitment age at all time points

FSC, First Seizure Clinic

Diagnosis Baseline 3-months 12-months

N Male % Female % N Male % Female % N Male % Female %

Epilepsy 85 65 35 57 65 35 39 72 28

Seizure 82 66 34 50 60 40 35 60 40

Syncope 33 58 42 26 65 35 15 67 33

Other 45 67 33 25 72 28 20 70 30

Total 245 65 35 158 65 35 109 67 33

Table 5. FSC Diagnostic Categories – gender distribution at all time points

FSC, First Seizure Clinic

131


There was no statistical difference between the proportion of males and

females in each diagnostic category at baseline (Chi-Square (3) = .850, p > .05),

three months (Chi-Square (3) = 1.070, p > .05), or twelve months (Chi-Square (3) = 1.263,

p > .05), with approximately two-thirds of the participants being male.

8.4 Evaluation – baseline

8.4.1 Relationship between age, gender and dependent variables

At the commencement of the data evaluation, tests were carried out to assess any effect of

age and gender on the baseline scores of the eight variables under consideration.

For age, using the Pearson product-moment coefficient, a small correlation was found

with general health, and with LAEP. Increased age was associated with lower perception

of general health [ r = -.17, N = 243, p < .05], and with lower total LAEP scores [ r = -.13, N

= 245, p < .05]. However, despite reaching statistical significance in this sample, in both

cases the shared variance between variables was only approximately 2%. Consequently for

further analyses it was not considered necessary to include age as a covariant (Pallant, 2001).

For gender, one-way analysis of variance (ANOVA) revealed a significant difference between

the mean scores of males and females for past worry [F(1,241) = 9.27, p < .01], future worry

[F(1,241) = 6.37, p < .05], anxiety [F(1,243) = 6.71, p < .05] and LAEP [F(1,242) = 14.473,

p < .001]. In all cases the female mean scores were higher than the male mean scores.

However, running a mixed between-within ANOVA repeated measures analysis

(Tabachnick & Fidell, 1996) on these four variables for the cohort as a whole, using gender

as the between subject factor, demonstrated that despite the higher initial scores for females

the rate of change did not differ between genders over time. Results were: past worry

[F(2,92) = .334, p > .05], future worry [F(2,94) = .134, p > .05], anxiety [F(2,93) = .793, p > .05],

LAEP [F(2,93) = 1.001, p > .05]. In addition the gender distribution was similar for all four

diagnostic categories (Table 5). Consequently, for further analyses it was not considered

necessary to control for gender.

132


8.4.2 Overview of cohort

Looking at the mean baseline scores for the cohort as a whole (Table 3), participants

assessed both general health and GQoL as moderate with scores just above the middle of

both scales in the direction of good health and GQoL. For both past worry and future

worry, no worry at all was reported by around 16% of the respondents with the overall

means indicating moderate levels of worry. On the perceived stigma scale, the means score

was low but overall approximately 47% reported some sense of perceived stigma.

For anxiety, the mean cohort score (7.20 ± 5.07) was just inside the range for non-cases.

Analysis by caseness revealed that 25% of the cohort had obtained scores indicating the

presence of anxiety at a clinical level (Table 6). This compares with the level of anxiety

reported in Australian community studies of 10% (ABS, 2008).

For depression the mean cohort score (4.78 ± 4.11) was within the non-case level. Analysis

by caseness indicates 11.8% of the cohort experienced depression at a clinical level (Table 6).

This compares with the level of depression reported in Australian community studies of 6%

(ABS, 2008).

133


DiagnosticCategory

HADS

levels

Anxiety N = 245 Depression N = 245

N % N %

Epilepsy 1 Non-case 50 58.8 65 76.5

2 Borderline 19 22.4 13 15.3

3 Case 16 18.8 7 8.2

Total 85 85

Seizure 1 Non-case 46 56.1 66 80.5

2 Borderline 13 15.9 7 8.5

3 Case 23 28.0 9 11.0

Total 82 82

Syncope 1 Non-case 20 60.6 29 87.9

2 Borderline 7 21.2 0 0.0

3 Case 6 18.2 4 12.1

Total 33 33

Other 1 Non-case 21 46.6 27 60.0

2 Borderline 7 15.6 9 20.0

3 Case 17 37.8 9 20.0

Total 45 45

Cohort 1 Non-case 137 55.9 187 76.4

2 Borderline 46 18.8 29 11.8

3 Case 62 25.3 29 11.8

Total 245 245FSC, First Seizure Clinic; HADS, Hospital Anxiety and Depression Scale 1 = non-case (0-7) 2 = borderline (8-10) 3 = case (11-21)

Table 6. FSC Anxiety and Depression – baseline case distribution

134


8.4.3 Diagnostic group differences

Having established an overview of the First Seizure Clinic study sample at baseline, tests

were carried out on the cohort to examine the association between diagnostic category and

the baseline scores of the eight variables under consideration. Data are presented in Table

7. Using one-way ANOVAs only two variables showed significant differences between

diagnostic categories: GQoL [F(3,189) = 3.191, p < .05] and past worry [F(3,239) = 2.592,

p = .05]. Using LSD (Least Significant Difference) post hoc tests it was demonstrated that

for GQoL, the mean score of the syncope group (M = 5.58 ± 1.36) was significantly higher

than the mean of all other categories. For past worry, the LSD post hoc test indicated

that significant difference lay between the mean for the lowest scoring syncope group

(M = 2.22 ± 1.09), and the highest scoring epilepsy group (M = 2.79 ± .97). It was of interest

to note that in the baseline sample the scores of the syncope group, although significantly

different to the other diagnostic categories in only two variables, were nevertheless

consistently the lowest scores (least distress) for the six measures of ill-being (past worry,

future worry, anxiety, depression, stigma and LAEP), and highest (least distress) in the

measure of GQoL, although not for general health.

For the variables of anxiety and depression, further analysis was carried out to determine if

caseness varied across diagnostic groups. The case distribution figures are presented in Table

6. Chi-Square tests were used to investigate this question and, to minimize the percentage

of cells in the analysis with a count of less than 5, those individuals with borderline and case

level scores were combined. The question was then asked as to whether the proportion of

non-cases varied between the diagnostic categories. For anxiety no difference was found.

However, for depression there was a significant difference between the diagnostic categories

in the number of non-cases (Chi-Square (3) = 9.863, p = .02). Inspection of the data shows

that the syncope group had the highest proportion of non-cases (88%) followed by the

seizure group (81%) and the epilepsy group (77%), while the ‘other’ group had only 60%

non-cases.

135


8.5 Evaluation – longitudinal

8.5.1 Cohort changes over twelve months

The mean and standard deviations of the key variables for the cohort at all time points

are presented in Table 7. It can be seen that there appears to be a general trend for well-

being to increase and ill-being to decrease over time. However, these trends are best tested

statistically with a repeated analysis of those who complete the measures on more than one

occasion.

Looking firstly at the cohort as a whole, one-way repeated measures ANOVAs were carried

out on the eight variables under examination to explore changes in scores over time. These

data are presented in Table 10 with outcomes recorded at baseline, three months and twelve

months. Only three variables showed significant changes in the mean over twelve months

with falls in past worry [F(2,93) = 28.836, p < .001)], future worry [F(2,95) = 22.455, p < .001]

and LAEP [F(2,94) = 3.405, p < .05]. For past worry and future worry, comparison using

LSD post hoc tests indicated that the greatest fall for both variables occurred in the first

three months. For LAEP, LSD post hoc tests indicated that the greatest fall occurred

between three and twelve months.

As noted above (8.4.1) in four of the variables, including the three which demonstrated

cohort change over twelve months, the female scores were significantly higher at baseline

(past worry, future worry, anxiety and LAEP). However, further analysis using mixed

between-within subjects ANOVAs, and gender as the between subjects factor, indicated

that for all four variables the rate of decrease for males and females was not significantly

different over time (8.4.1). Therefore gender was not considered to be the factor responsible

for the longitudinal changes noted in cohort scores for past worry, future worry, and LAEP.

The repeated measures analysis showed general health and GQoL scores to be relatively

stable over twelve months with just a modest dip at three months. The mean stigma

score shifted upward very slightly. The percentage of patients who reported any sense of

perceived stigma was 39% at baseline, 41% at three months and 35% at twelve months.

136


Tabl

e 7.

FS

C D

iagno

stic C

atego

ries –

mea

n sco

res fo

r key

varia

bles a

ll av

ailab

le da

ta

Varia

ble

Tim

e Po

ints

Dia

gnos

tic c

ateg

ory

Com

paris

on o

f di

agno

stic

cat

egor

ies

Epi

leps

ySe

izur

eSy

ncop

eO

ther

Tota

l Coh

ort

F va

lues

NM

ean

(SD

)N

Mea

n (S

D)

NM

ean

(SD

)N

Mea

n (S

D)

NM

ean

(SD

)G

ener

alBa

selin

e85

3.47

(0.

95)

813.

42 (

0.93

)32

3.28

(0.

85)

453.

40 (

1.12

)24

33.

42 (

0.96

)0.

304

heal

th3-

mon

ths

563.

39 (

0.89

)49

3.45

(0.

89)

263.

50 (

0.95

)25

3.44

(0.

82)

156

3.44

(0.

88)

0.09

3

12-m

onth

s39

3.44

(0.

85)

343.

76 (

0.78

)15

3.80

(0.

78)

203.

45 (

0.76

)10

83.

59 (

0.81

)1.

560

GQ

oLBa

selin

e65

4.88

(1.

41)

704.

69 (

1.42

)26

5.58

(1.

36)

324.

47 (

1.69

)19

34.

83 (

1.48

)

3.1

91 *

*

3-m

onth

s48

4.92

(1.

62)

445.

05 (

1.54

)22

5.37

(1.

40)

214.

67 (

1.43

)13

54.

99 (

1.53

) 0

.804

12-m

onth

s39

5.26

(1.

23)

345.

35 (

1.32

)14

5.43

(1.

34)

194.

63 (

1.50

)10

65.

20 (

1.33

)1.

479

Past

wor

ryBa

selin

e85

2.79

(0.

97)

822.

52 (

1.05

)32

2.22

(1.

01)

442.

55 (

1.11

)24

32.

58 (

1.04

) 2

.592

*

3-m

onth

s56

2.20

(0.

96)

481.

88 (

0.96

)26

1.65

(0.

63)

251.

60 (

0.76

)15

51.

91 (

0.91

)

3.7

83**

12-m

onth

s38

2.08

(0.

88)

341.

74 (

0.79

)15

1.40

(0.

83)

201.

70 (

0.92

)10

71.

80 (

0.87

)2.

602

Futu

re w

orry

Base

line

852.

85 (

1.01

)82

2.63

(1.

11)

322.

31 (

1.06

)44

2.61

(1.

11)

243

2.66

(1.

08)

2.03

6

3-m

onth

s57

2.46

(0.

98)

502.

04 (

0.97

)26

1.73

(0.

87)

251.

72 (

0.74

)15

82.

09 (

0.97

)

5.6

47**

*

12-m

onth

s38

2.08

(0.

82)

341.

97 (

1.03

)15

1.60

(0.

91)

201.

75 (

0.79

)10

71.

92 (

0.90

)1.

306

FSC,

Firs

t Sei

zure

Clin

ic; G

QoL

, Glo

bal Q

ualit

y of

Life

; HA

DS,

Hos

pita

l Anx

iety

Anx

iety

and

Dep

ress

ion

Scal

e; L

AE

P, L

iver

pool

Adv

erse

Eve

nts P

rofil

e

*p =

.05,

**p

< .0

5, *

**p

< .0

1

137


Tabl

e 7.

FSC

Diag

nosti

c Cat

egorie

s – m

ean

scores

for k

ey va

riable

s all

avail

able

data

cont

.

Varia

ble

Tim

e Po

ints

Dia

gnos

tic c

ateg

ory

Com

paris

on o

f di

agno

stic

cat

egor

ies

Epi

leps

ySe

izur

eSy

ncop

eO

ther

Tota

l Coh

ort

F va

lues

NM

ean

(SD

)N

Mea

n (

SD)

NM

ean

(SD

)N

Mea

n (S

D)

NM

ean

(SD

)H

AD

SBa

selin

e85

6.84

(4.

96)

827.

28 (

4.96

)33

6.64

(4.

83)

458.

18 (

5.63

)24

57.

20 (

5.07

)0.

847

Anx

iety

3-m

onth

s56

7

.00

(5.4

1)49

6.49

(5.

10)

265.

77 (

4.79

)25

7.08

(4.

28)

156

6.65

(5.

02)

0.43

1

12-m

onth

s39

5

.69

(5.2

9)35

6.46

(5.

18)

155.

87 (

4.84

)20

5.40

(4.

62)

109

5.91

(5.

02)

0.22

7

HA

DS

Base

line

85

4.2

9 (3

.89)

824.

79 (

3.69

)33

4.27

(4.

49)

456.

02 (

4.78

)24

54.

78 (

4.11

)1.

956

Dep

ress

ion

3-m

onth

s56

5

.05

(4.3

5)49

3.90

(0.

50)

263.

73 (

3.84

)25

5.80

(4.

83)

156

4.59

(4.

14)

1.80

7

12-m

onth

s39

3

.77

(4.5

4)35

3.43

(3.

37)

154.

40 (

3.88

)20

4.20

(3.

96)

109

3.83

(3.

96)

0.29

7

Perc

eive

dBa

selin

e66

1

.58

(2.4

3)70

1.47

(2.

38)

261.

31 (

1.98

)35

2.34

(2.

94)

197

1.64

(2.

46)

1.24

0

stig

ma

3-m

onth

s49

1

.90

(2.3

7)44

1.43

(2.

20)

220.

86 (

1.83

)23

2.13

(2.

76)

138

1.62

(2.

32)

1.49

5

12-m

onth

s39

1

.15

(2.2

3)35

1.49

(2.

20)

151.

93 (

2.79

)20

1.10

(1.

94)

109

1.36

(2.

24)

0.55

6

LAE

PBa

selin

e85

36.8

6 (1

0.68

)81

37.9

0 (1

0.63

)33

35.6

1 (1

0.18

)45

41.1

1 (1

2.93

)24

537

.76

(11.

14)

1.97

3

3-m

onth

s56

39.1

5 (1

1.85

)49

35.8

2 (1

0.12

)26

34.9

3 (1

0.92

)25

36.2

3 (1

0.53

)15

636

.93

(11.

00)

1.25

7

12-m

onth

s39

34.8

5 (1

1.25

)35

33.7

7

(9.7

5)15

36.4

0 (1

1.12

)20

35.2

5 (1

2.77

)10

934

.79

(10.

95)

0.21

6FS

C, F

irst S

eizu

re C

linic

; GQ

oL, G

loba

l Qua

lity

of L

ife; H

AD

S, H

ospi

tal A

nxie

ty a

nd D

epre

ssio

n Sc

ale;

LA

EP,

Liv

erpo

ol A

dver

se E

vent

s Pro

file

*p =

.05,

**p

< .0

5, *

**p

< .0

1

138


For the variables of anxiety and depression, the mean scores of the repeated measures

sample showed a decrease over 12 months, although this was not significant. Further

examination of the data was carried out to identify whether the mean score variations

reflected changes in the number of cases across the cohort. The data is presented in tables

8 and 9. For anxiety and depression cases, as well as depression borderline cases, there was

an increase at three months. However, at 12 months both anxiety and depression cases had

returned to baseline levels while borderline cases for both remained above baseline levels.1

1. For case distribution of anxiety and depression within each diagnostic category in the repeated measures sample see appendix H.

FSC, First Seizure Clinic; HADS, Hospital Anxiety and Depression Scale 1 = non-case (0-7) 2 = borderline (8-10) 3 = case (11-21)

Table 9. FSC Depression – case distribution in repeated measures sample

Depression HADS levels Baseline 3-months 12-months

N % N % N %

Cohort N = 96 1 Non-case 79 82.3 70 72.9 75 78.1

2 Borderline 9 9.4 17 17.7 13 13.5

3 Case 8 8.3 9 9.4 8 8.3

Total 96 96 96

Table 8. FSC Anxiety – case distribution in repeated measures sample

Anxiety HADS levels Baseline 3-months 12-months

N % N % N %

Cohort N = 96 1 Non-case 63 65.6 58 60.4 62 64.6

2 Borderline 14 14.6 14 14.6 15 15.6

3 Case 19 19.8 24 25.0 19 19.8

Total 96 96 96

FSC, First Seizure Clinic; HADS, Hospital Anxiety and Depression Scale 1 = non-case (0-7) 2 = borderline (8-10) 3 = case (11-21)

139


8.5.2 Comparison of changes across diagnostic categories over twelve months

To examine the effect of diagnostic category on the variable outcomes over twelve months,

mixed between-within subjects ANOVAs were utilized with diagnostic category as the

between subjects factor. These data are presented in Table 10. Importantly no significant

time by diagnostic category interactions were found for any of the variables.2

2. For mean scores for all diagnostic categories at each time point for the repeated measures sample see appendix I.

Table 10. FSC Longitudinal Assessment – comparison of diagnostic categories repeated measures sample

Variable N Cohort Means (SD) F Values

Baseline 3-months 12-months Total Cohort

Diagnostic groups

General health 96 3.61 ( 0.92) 3.48 (0.85) 3.60 (0.83) 1.90 1.338

GQoL 73‡ 5.18 (1.26) 5.03 (1.48) 5.15 (1.29) 0.39 0.385

Past worry 95 2.56 (0.94) 1.91 (0.95) 1.80 (0.91) 27.88† 0.626

Future worry 97 2.59 (0.99) 2.04 (0.97) 1.91 (0.93) 20.91† 0.679

HADS-anxiety

96 6.40 (5.07) 6.18 (5.16) 5.82 (4.88) 1.20 0.368

HADS-depression

96 4.06 (3.76) 4.45 (4.15) 3.92 (4.08) 1.96 0.737

PerceivedStigma

75‡ 1.17 (1.98) 1.47 (2.06) 1.41 (2.40) 0.60 0.535

LAEP 96 36.51 (10.99) 36.00 (11.23) 34.61 (11.14) 2.07§ 1.551

GQoL, Global Quality of Life; HADS, Hospital Anxiety and Depression Scale; LAEP, Liverpool Adverse Events Profile* p<.05, ** p<.001 † baseline is significantly different from both 3 and 12 months (LSD post hoc tests)‡ N is smaller in two variables due to their later inclusion in data collection. § LAEP cohort change does not show significance in this analysis comparing diagnostic groups, due to the greater partition of the variance (8.5.2)

140


8.6 Correlation analysis

To explore the strength and direction of the linear relationships between the variables

of interest in this chapter a correlation analysis was carried out between key variables at

baseline. Results are provided in Table 11.

General health displayed a moderate, positive correlation with GQoL, a small negative

correlation with past and future worry, and a moderate negative correlation with anxiety,

depression, stigma and LAEP.

Past and future worry were strongly correlated, sharing 64% of the variance. Both were

positively correlated with anxiety, depression and LAEP at a moderate level, and with

stigma at a minimal level. Both were negatively correlated with general health and GQoL at

a minimal level.

Variables 1 2 3 4 5 6 7

1. General Health - -

2. GQoL .396** -

3. Past Worry -.228** -.226**

4. Future Worry -.280** -.265** .803**

5. HADS Anxiety -.397** -.610** .442** .445**

6. HADS Depression -.402** -.655** .324** .381** .707**

7. Perceived Stigma -.297** -.499** .170* .272** .603** .516**

8. LAEP -.471** -.591** .395** .382** .742** .615** .549**

Table 11. FSC Correlation Analysis – Baseline

FSC, First Seizure Clinic; GQoL, Global Quality of Life; HADS, Hospital Anxiety and Depression Scale; LAEP, Liverpool Adverse Events Profile; (N varies between 191-245, depending on available data)*p < .05; **p < .01

141


Anxiety and depression correlated strongly, sharing 50% of the variance. They had a strong

positive correlation with stigma and LAEP, and moderate positive correlations with past

and future worry. They were both negatively correlated strongly with GQoL (depression and

GQoL shared 43% of the variance). They were both also negatively correlated with general

health to a moderate degree.

The correlations were similar at each time point and the correlations for three and twelve

months are included in appendix J.

8.7 Summary

Chapter 8 has presented a demographic and psychosocial description of a sample of First

Seizure Clinic patients, plus the outcomes of a 12-month prospective evaluation of the First

Seizure Clinic patients using eight measures to assess psychosocial outcomes and symptoms

of possible medication side effects. After introducing the descriptive data, the eight key

variables were examined at baseline for the effects of age and gender. Age was of little

influence, but gender was found to be associated with higher baseline scores for past worry,

future worry, anxiety and LAEP. Nevertheless, analysis demonstrated that the degree of

longitudinal change for the cohort did not differ between males and females.

For the cohort as a whole, notable findings were the levels of anxiety and depression. At

baseline the percentage of people identified with clinical levels of either condition was

approximately twice the percentage of people identified with these conditions within

the Australian community. For depression at baseline, the diagnostic category ‘other’

had significantly more cases and borderline cases combined than any of the alternative

diagnostic categories.

When the mean scores for all variables were compared between diagnostic categories at

baseline, the syncope group was consistently the lowest scoring group on measures of

distress (i.e. least distress). For past worry there was a statistically significant difference

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between the lowest score of the syncope group and the highest score of the epilepsy group.

The epilepsy group was also the highest scoring group for future worry but this was not

significant. For GQoL the syncope group scored significantly higher than all other groups.

On first examination of the variables the data suggested a trend for well-being to increase

and ill-being to decrease over time. However, repeated measures analysis over twelve

months for the cohort as a whole showed statistically significant change in only three

variables, with falls in the mean score for past worry, future worry and LAEP. Comparison

of changes across diagnostic categories over 12 months found no significant time by

diagnostic category interactions for any of the variables.

Correlations demonstrated general alignment between the measures of well-being and the

measures for ill-being. The strongest positive correlations were between past worry and

future worry. Anxiety, depression, LAEP and perceived stigma were also strongly positively

correlated. The strongest negative correlation was between depression and GQoL.

When reviewing these results, it was of particular interest to note that the LAEP scores

did not vary significantly between diagnostic groups at any time point, nor was there any

difference between the diagnostic categories in the degree of LAEP score change over

time. Where similar responses by all diagnostic categories may be understandable for

the seven general measures examined (general health, GQoL, past worry, future worry,

anxiety, depression and even stigma), this is not the expectation for LAEP, which is

specifically designed to measure symptoms reflecting adverse AED effects. Since two of

the diagnostic categories contained patients with a non seizure-related diagnosis who were

not prescribed AEDs, these groups might be anticipated to produce lower LAEP scores.

This did not occur. Non-seizure groups scored similar or higher LAEP scores to seizure

groups (Table 7). In addition, correlations highlighted a strong association between LAEP,

anxiety and depression. Given that the LAEP scale is intended to assess symptoms related

to adverse effects of AEDs, these results suggest that the interrelationship between LAEP,

AED use, diagnosis, anxiety and depression, needs further examination. This issue is

therefore addressed in more detail in chapter 10.

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Chapter 9 presents the outcomes of a randomized controlled trial (RCT) nested within the

larger overall prospective study of First Seizure Clinic patients. The RCT was designed to

test the effect of a support program for new-onset seizures and epilepsy patients.

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Chapter 9

Results 2: New-onset seizures and epilepsy – a randomized controlled trial to evaluate a patient support program

9.1 Introduction

Chapter 9 presents the outcomes of a randomized controlled trial (RCT) nested within the

larger overall study of First Seizure Clinic patients. The RCT was a 12-month prospective

study which tested the effect of an intervention specifically designed to reduce negative

psychosocial outcomes in the new-onset seizure/epilepsy patients of a First Seizure Clinic.

The chapter begins with an overview of the RCT (9.2) and the outcome measures (9.3).

Then follows descriptive data (9.4). The seizure/epilepsy cohort as a whole is described,

with reference to an external comparison with a similar cohort, and the two comparative

groups of the RCT (intervention and control) are then presented (9.4.2). The evaluation of

the RCT is reported in three sections; the first is an analysis of data collected using the eight

key variables assessing psychosocial characteristics and symptoms of possible adverse effects

of AEDs (9.5), the second compares the use of health information sources by participants

(9.6), and the third is an examination of patient responses to the clinic collected through the

service satisfaction scale and open-ended questions (9.7). The chapter ends with a summary

and preview of chapter 10 (9.8).

9.2 Overview of the randomized controlled trial (RCT)

The RCT was designed to test the effect of an intervention in patients with new-onset

seizures or epilepsy. Nested within the larger overall study of First Seizure Clinic patients

(N = 245, chapter 8), where not all participants acquired a diagnosis of either seizure or

epilepsy, the RCT comprises only the subset of patients who have either of these diagnoses

(N = 167). A flowchart outlining the framework of the study is provided in Figure 2. The

intervention consisted of a patient support service provided by support workers of the

Epilepsy Foundation of Victoria (EFV). Using the framework of an RCT to randomly

145


provide either usual clinic care plus the support service, or usual clinic care alone, the study

aimed to identify any differences in outcomes for patients due to the support program.

The theory underpinning the RCT, the study protocol, and a full explanation of the

randomization process is presented in chapter 7 (7.3).

At the time of enrolment into the larger overall study of First Seizure Clinic patients,

all participants regardless of possible diagnosis (N =245), were randomly designated as

potential control (N = 124) or intervention (N = 121) candidates for the RCT. This ensured

that randomization was accomplished prior to the first consultation and therefore, before

the diagnosis was confirmed. All patients designated as intervention candidates were

provided with the support service regardless of diagnosis. In order to carry out the RCT,

only data from the seizure and epilepsy patients were utilized for the analysis, resulting in a

baseline sample of 167 (control group N = 79, intervention group N = 88). Losses over time

resulted in a 3-month sample of 107 (64% of baseline) with a control group of N = 51, and

an intervention group of N = 56. The 12-month sample of 74 (44% of baseline) comprised a

control group of N = 32, and an intervention group of N = 42.

First Seizure Clinic recruitment: Nov 2001 – August 2004Patients with no prior known epilepsy N=297

Baseline [B/L] enrolments N=245

*Exclusions N =13*Refusals N=39

Syncope & OtherNot required for RCTN=45

B/L to 12 monthsRCT Control†Total Withdrawn or Lost N=47

RCT ControlB/L N=79

Epilepsy N=41Seizure N=38

RCT InterventionB/L N=88

Epilepsy N=44Seizure N=44

Potential Control GroupAll four diagnoses

N=124

Potential Intervention GroupAll four diagnoses

N=121

RCT Control3M N=51

[65% of B/L]Epilepsy N=29Seizure N=22

RCT Intervention3M N=56


RCT ControlN=32


RCT InterventionN=42


Syncope & OtherNot required for RCTN=33



3-12 months†Withdrawn N=3†Lost N=16

3-12 months†Withdrawn N=2†Lost N=12

B/L -12 monthsRCT Intervention†Total Withdrawn or Lost N=46

Figure 2. Randomized Controlled Trial flowchart

* Exclusions and refusals are detailed in Chapter 7 (7.2.8.1)† Withdrawal and loss are discussed in Chapter 8 (8.3.2)

146



The outcomes used to assess the RCT included the eight key variables utilized in chapter

8: perception of general health, a single-item global measure of quality of life (GQoL),

past worry about seizures/blackouts, future worry about seizures/blackouts, anxiety and

depression (measured using the Hospital Anxiety and Depression Scale – HADS), perceived

stigma, and symptoms of possible adverse effects of AEDs assessed with the Liverpool

Adverse Events Profile (LAEP). In addition there was a checklist on patient information

sources, a service satisfaction scale, and open-ended questions regarding patient responses to

the clinic service. Detailed descriptions of the measures utilized can be found in chapter 7

(7.2.10).

When reading the results of this investigation, it is important to note that there are some

variables with fewer responses available for analysis. This is primarily due to the later

introduction of several measures into this study. In chapter 9 these variables are: GQoL,

perceived stigma, sources of health information, and the service satisfaction scale.

9.3.1 Statistical normality

The eight variables which are common to the analyses in both chapters 8 and 9 were

subject to preliminary analysis as described in chapter 8 (8.2). Statistical normality for

those variables is discussed in chapter 8 (8.2). For the service satisfaction scale the score

range, mean, standard deviation, skew, kurtosis and Cronbach alpha coefficient, are

provided in Table 12. Scores indicate that the scale met the assumptions of normality for

skewness and kurtosis (Tabachnick & Fidell, 1996). The scale demonstrated a minimum

Cronbach alpha coefficient of .92 indicating a high internal reliability (Pallant. 2001). The

service satisfaction scale was not measured at baseline because the service had not yet been

experienced. The initial measurement for this scale was taken at three months.

Table 12. Service satisfaction scale Score range N Mean SD Skew Kurtosis Alpha

3-months 8-32 137 23.92 5.08 -0.44 0.45 .9212-months 8-32 107 24.23 5.08 -0.25 -0.03 .94

147



9.4.1 The seizure / epilepsy sample

The new-onset seizure/epilepsy sample identified in the First Seizure Clinic study which

forms the cohort for the RCT, constitutes a prospective sample, the nature of which has

been unusual in epilepsy research until recent years. In the past, there have been obstacles

to identifying and recruiting newly diagnosed patients for research projects, with the result

that prospective studies of such people have been limited. For example, it has often been the

case internationally, that investigation and treatment of first seizures has been carried out

by non-specialists (SIGN, 2003), either initially or long-term. Therefore patients have been

subject to a wide variety of diagnostic and treatment protocols, in diverse settings, making

it extremely difficult to collect consistent research data. Where the management process has

involved a specialist opinion it has also been a common occurrence, in many countries, for

an extended time lapse to occur between the first seizure and the specialist consultation

(Epilepsy Foundation, 2004; APPGE, 2007). This means that although new-onset seizure

patients might eventually come to the attention of researchers at a specialist clinic, some

time may have well elapsed since the initial presentation; early management of each patient

may have varied, and sometimes, further seizures may have occurred. The current First

Seizure Clinic setting, where patients were referred within two weeks of the initial seizure

(as far as possible), facilitated the recruitment of a large cohort of patients, managed under a

common protocol, at a very early point in the diagnostic process.

The First Seizure Clinic baseline seizure/epilepsy cohort, recruited as detailed above (9.2)

comprised 167 patients of whom 82 were classified as single seizure and 85 classified as

epilepsy. The mean age of the group was 36 years (±16) and 65% of the group was male. At

baseline 79% of the sample were not taking AEDs.

148


9.4.1.1 External comparisons

Although not possible to identify a study cohort which is identical to the First Seizure

Clinic sample, the Multicenter Study of Early Epilepsy and Single Seizures [MESS]

(Jacoby et al., 2007) recruited patients with ‘…an adequately documented recent history of

clinically definite, spontaneous, unprovoked, epileptic seizures, previously untreated, and

both clinician and patient were uncertain about whether to commence treatment’ (Jacoby

et al., 2007, p. 1189). The median number of seizures per person at baseline was 1 (IQR,

1-2). When comparing the MESS study with the current study sample, the two cohorts

were similar in age and gender, although in the First Seizure Clinic study the sample was

somewhat younger and more likely to be male. The distributions of scores for general

health, past worry, anxiety, depression, and LAEP are also similar. Future worry was higher

in the current study sample than in the MESS cohort, as was perceived stigma. Baseline

data, where comparisons are possible, are presented in Table 13. Further discussion of these

comparisons occurs in chapter 11.

149


Table 13. Comparative data from the First Seizure Clinic new onset seizure/epilepsy sample and the Multicenter Study of Early Epilepsy and Single Seizures [MESS]*

Baseline

First Seizure Clinic N = (167)

MESS (N = 331)†

Age, median (IQR) 32 (24-45) 36 (22-53)Gender, male % 65.0 59.0

General Health‡, %Excellent 13.3 15.5Very good 34.3 33.5Good 38.0 32.0Fair 12.6 15.5Poor 1.8 3.0

Worried about past Szs‡, % 49.1 50.0

Worried about future Szs‡, % 56.8 33.5

HADS Anxiety score‡, median (IQR) 6 (3-10) 5.75 (2.5-9.5)Anxiety caseness %Not anxious 57.5 64.5Borderline 19.1 15.5Anxious 23.4 20.0

HADS Depression score‡, median (IQR) 4 (1-7) 3 (1-6)Depression caseness %

Not depressed 78.4 84.0Borderline 12.0 8.0Depressed 9.6 7.5

Perceived stigma‡, % 46.3 26.5

LAEP score‡, median (IQR) 36.3 (29-44.2) 34.5 (27.5-44.5)

* Jacoby et al., 2007HADS, Hospital Anxiety Depression ScaleLAEP, Liverpool Adverse Events ProfileIQR, interquartile range† Published data for the two baseline study groups averaged to give approximate total cohort figure for purposes of comparison‡ Missing data N ≤ 5 for MESS study

150


9.4.2 The intervention and control groups

9.4.2.1 Diagnoses

On completion of randomization at baseline, the control group contained 79 participants

and the intervention group contained 88. Both the control and the intervention groups

contained patients with diagnoses of seizure or epilepsy (Figure 2), and there was no

statistical difference between the proportion of seizure versus epilepsy patients in each

group at baseline (Chi-Square (1) = .01, p > .05), three months (Chi-Square (1) = .27, p > .05 ),

or twelve months (Chi-Square (1) = 0, p > .05).

9.4.2.2 Age

The mean recruitment age of the control group at baseline was 39.1 years (±17.3) and the

mean recruitment age of the intervention group was 33 years (±13.9) (Table 14). There was

a significant difference between the mean recruitment ages of the study groups at baseline

[F(1,165) = 6.45, p < .05], at three months [F(1,105) = 6.46, p < .05], and at twelve months

[F(1,72) = 8.08, p < .05]. However, earlier examination of the overall First Seizure Clinic

cohort data in chapter 6 indicated that only two of the key study variables had a small

correlation with age; the total shared variance in both cases being only approximately 2%

(6.4.1). Therefore, age was not taken into consideration in the further analyses of data for the

RCT.

Table 14. RCT study groups – mean recruitment age at each time point

Baseline N = 167 3-months N = 107 12-months N = 74C I C I C I

Mean Age 39.1 33.0 41.5 33.4 44.7 33.6Standard Deviation 17.3 13.9 18.4 14.8 18.7 15.1C, Control; I, Intervention

151


9.4.2.3 Gender

The gender breakdown for the control and intervention groups (Table 15) reflected the

gender breakdown of the larger overall First Seizure Clinic study, with more males than

females (8.3). At baseline both groups contained approximately 65% males, with no

significant differences between groups for gender distribution at baseline (Chi-Square

(1) = 0, p > .05), three months (Chi-Square (1) = .05, p > .05) or twelve months (Chi-

Square (1) = 1.31, p > .05).

9.4.2.4 Social background

The social background measures for both study groups are summarized in Table 16. All

measures were similar for both groups and there were no significant differences between the

groups in regard to residential setting (Chi-Square (2) = 1.11, p > .05), education levels, (Chi-

Square (3) = 4.72, p > .05), or employment status (Chi-Square (3) = 5.3, p > .05).

Gender Baseline N = 167 3-months N = 107 12-months N = 74C % I % C % I % C % I %

Male 64.6 65.9 64.7 60.7 75.0 59.5Female 35.4 34.1 35.3 39.3 25.0 40.5C, Control; I, Intervention

Table 15. RCT study groups – gender distribution at each time point

Social background measures Control InterventionN % N %

Residential setting 77 88Alone 19.5 13.6Partner 29.9 34.1Friends/Others 50.6 52.3

Education 79 88Secondary not completed 22.8 26.1Secondary completed 39.2 23.9Post secondary training 22.8 30.7Degree 15.2 19.3

Employment 65 71Full time 44.6 47.9Part time 6.3 14.2Not employed 21.5 23.9Student 13.8 7.0Retired 13.8 7.0

Table 16. RCT study groups – social background measures

152


9.5 RCT evaluation – psychosocial well-being and the adverse effects of medication

9.5.1 Baseline assessment

For the control and intervention groups, the baseline scores for the eight key variables were

compared, using a series of one-way ANOVAs. The only variable to reveal a significant

difference in the mean scores of the two groups was past worry. The control mean was the

higher of the two [F(1,165 = 4.025, p < .05]. Means scores at all time points are shown in

Table 17.

9.5.2 Longitudinal assessment

The objective of the longitudinal assessment was to identify any differences in outcome

between the control and intervention groups at three and twelve months. As the assessment

of differential change over time between subgroups of a cohort can be carried out using

a mixed between-within subjects ANOVA (Tabachnick & Fidell, 1996), this analysis was

carried out with a repeated measures sample. The three time points were baseline, three

months and twelve months, and the between subjects factor was the study group (control

or intervention). Table 18 provides the means for both study groups at all three time points,

and all F values. This analysis controls for any initial differences between the control and

intervention groups on the key variables, of which only one was significant as discussed

above (9.5.1).

For the sample as a whole over twelve months, all the outcomes were in line with the scores

of the overall First Seizure Clinic cohort discussed in chapter 8. Three variables showed

significant mean falls, these being past worry, future worry and LAEP. For past worry and

future worry, comparison using LSD post hoc tests indicated that the greatest fall for both

variables occurred in the first three months. For LAEP, LSD post hoc tests indicated that

the greatest fall occurred between three and twelve months. General health, GQoL and

perceived stigma showed only minor fluctuations with mean scores for general health and

GQoL dipping at three months and returning to baseline levels while stigma rose slightly.

153


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155


Anxiety and depression mean scores also showed minimal change. Case rates for anxiety

and depression did not decrease over twelve months (Table 19).

When results for the control and intervention groups were compared they showed

no significant time by group interactions for any of the variables. In other words, the

intervention and control groups did not show differential change over time in well-being or

ill-being.

156


Table 19. RCT Anxiety – case distribution for diagnostic groups – repeated measures sample

RCT study groups

HADS case levelsControl Intervention CohortN % N % N %

Baseline Non-case 22 75.9 21 61.8 43 68.2

Borderline 4 13.8 5 14.7 9 14.3

Case 3 10.3 8 23.5 11 17.5

Total 29 34 63

3-months Non-case 16 55.2 23 67.6 39 61.9

Borderline 7 24.1 1 2.9 8 12.7

Case 6 20.7 10 29.5 16 25.4

Total 29 34 63

12-months Non-case 19 65.5 23 67.7 42 66.7

Borderline 4 13.8 3 8.8 7 11.1

Case 6 20.7 8 23.5 14 22.2

Total 29 34 63RCT, randomized controlled trial; HADS, Hospital Anxiety and Depression Scale

Table 20. RCT Depression – case distribution for diagnostic groups – repeated measures sample

RCT study groups

HADS case levelsControl Intervention CohortN % N % N %

Baseline Non-case 26 89.7 27 79.4 53 81.4

Borderline 2 6.9 4 11.8 6 9.5

Case 1 3.4 3 8.8 4 6.3

Total 29 34 63

3-months Non-case 22 75.9 27 79.4 49 77.7

Borderline 5 17.2 6 17.7 11 17.5

Case 2 6.9 1 2.9 3 4.8

Total 29 34 63

12-months Non-case 22 75.9 27 79.4 49 77.8

Borderline 3 10.3 5 14.7 8 12.7

Case 4 13.8 2 5.9 6 9.5

Total 29 34 63RCT, randomized controlled trial; HADS, Hospital Anxiety and Depression Scale

157


9.6 RCT evaluation – sources of information for patients

The question investigating sources of patient information, asked participants to indicate

which of 13 sources they used to obtain information about health issues and whether they

considered the information helpful, very helpful or not helpful. Participants could select up

to 13 sources if they wished. These data were constructed as a graph for visual inspection,

combining the categories of helpful and very helpful into one category, as helpful. For

both the control and intervention groups the pattern of responses was very similar at both

three and twelve months. Therefore, because the number of responses at 12-months was

limited, and the most active period of the intervention program was in the early months

after diagnosis, it was decided to include only the 3-month data in this analysis. The data is

presented in Figures 3a and 3b.

Inspection of the graphs reveals a very similar pattern of responses for both the control and

intervention groups with one notable difference. Whilst the general practitioner (GP) is a

major source of information to both groups, (over 60% of both groups note the GP as an

information source), 80% of the intervention group identify the support worker as a source

of information. It must be noted that the graph does show some members of the control

group (33%) also identifying the support worker as a source of information. However, this

is possibly due to their contact with the researcher who welcomed every First Seizure Clinic

study participant to the clinic and explained the project to them, a factor which may have

influenced the intervention group responses as well. This factor is further discussed in

chapter 11.

In addition to the GP and the support worker, 20% of both groups identified family

and friends, health professionals (this included the clinic doctor), a person with a similar

condition, EEG staff and the internet as sources of information. Of these, information

from the EEG staff and the internet was most likely to be considered unhelpful. The least

used sources of information were; direct contact with the Epilepsy Foundation of Victoria,

libraries, pharmacists, phone services and ‘other’ information sources. In both groups, less

than 20% of participants utilized these sources.

158


0

10

20

30

40

50

60

70

1 2 3 4 5 6 7 8 9 10 11 12 13

Control group at 3-months N = 45p

erc

enta

ge

use

of

sou

rces

sources of information

not helpful

helpful

Figure 3a. RCT control group – sources of patient health information

0

10

20

30

40

50

60

70

80

90

1 2 3 4 5 6 7 8 9 10 11 12 13

Intervention group at 3-months N = 48

per

cen

tag

e u

se o

f so

urc

es

sources of information

not helpful

helpful

1. General Practitioner2. Family or friends3. Health professional (includes clinic doctor)4. EFV worker5. Person with similar condition6. EEG technician7. Internet8. EFV office9. Other source10. Library11. Pharmacist12. Other health practitioner13. Telephone service

Sources of patient health information

Figure 3b. RCT intervention group – sources of patient health information

159


9.7 RCT evaluation – patient responses to the service

9.7.1 Service satisfaction scale

The baseline measure for the service satisfaction scale was taken at three months. Mean

scores for the sample at 3-months and 12-months are provided in Table 21. The scores

indicated weakly positive satisfaction with the First Seizure Clinic overall. The scores of

the two study groups were compared at both time points using a one-way ANOVA and no

difference was found between them.

Table 21. RCT service satisfaction scale – mean scores at both time points

Variable 3-months Means compared

12-months Means compared

service satisfaction scale

CN = 45

IN = 48

F value CN = 31

IN = 41

F value

Mean (SD) Mean (SD) Mean (SD) Mean (SD)

24.22 (5.12) 23.67 (5.28) 0.265 24.77 (4.12) 24.29 (5.39) 0.172C, Control; I, Intervention

A mixed between-within subjects ANOVA was used to assess differential change in

satisfaction levels over time between the control and intervention groups. Using a repeated

measures sample at three and twelve months, with study group as the between groups

factor, no change in score was found for the sample as whole and no significant time group

interactions were apparent. Mean scores for the repeated measure sample are provided in

Table 22.

Table 22. RCT service satisfaction scale – longitudinal change with repeated measures sample

Variable Means (SD) Mixed between-within subjects ANOVA

service satisfaction scale

3-months 12-months Total sample

Between RCT Groups

C

N = 25

I

N = 30

C

N = 25

I

N = 30

F value F value

25.08 (3.80) 23.67 (5.42) 25.12 (4.35) 23.67 (5.40) 0.001 0.001C, Control; I, Intervention

160


9.7.1.1 Correlations between the service satisfaction scale and other measures

To explore the strength and direction of the linear relationships between the service

satisfaction scale and the eight key variables of interest, a correlation analysis was carried out

at three months. The scale demonstrated a small positive correlation with general health and

GQoL and a small negative correlation with past worry, future worry, anxiety, depression

and LAEP. Of interest was the strong negative correlation with perceived stigma, in which

the two variables shared 26% of the variance. At twelve months all the correlations were

similar, but generally weaker. However, there was no longer a correlation between the

service satisfaction scale and depression and the correlation between service satisfaction

scale and stigma was moderately negative rather than strongly negative. The correlation

values are reported in appendix J.

9.7.2 Open-ended questions

The written answers to the open-ended questions seeking patient comments were recorded

into an Excel database for further examination. Major themes were isolated and examples

presented to enrich the quantitative analyses.

9.7.2.1 Responses – three months

At three months the study questionnaires included three open-ended questions worded

as follows: what were the most helpful features of the first seizure clinic, what were the

least helpful features of the clinic and, are there any other comments or suggestions you

would like to make about the First Seizure Clinic. The patient responses to the open-ended

questions were collated into an Excel data base and examined. The pattern of responses

for both groups was very similar. At three months, 51 questionnaires were received from

the control group and 56 from the intervention group. In both groups, the proportion of

patients who took the opportunity to comment on the clinics was approximately 70%. Most

patients made positive comments, but almost half of these people also added a negative

comment about some aspect of the service. Just 4% of each group made comments which

were negative only.

161


In the control group, the patients commented positively about the attitude of the doctors,

the rapid provision of investigations such as EEG and MRI, the freedom from expense,

and their gratitude for receiving an explanation about what had happened to them. Negative

comments tended to focus more on the logistics of the service, such as waiting times to

receive an appointment, parking problems, waiting times at the clinics, the busy schedule

at the clinic, and the lack of discussion time. Comments touched on the uncertainty of the

diagnosis and the need to have a speedy answer. A number were unhappy at seeing different

doctors at each visit.

In their own words; one patient expressed ‘…confidence that doctors are specialists of

epilepsy/seizures’. Another wrote of the doctors, ‘I thought that their understanding of

the seizure was good and the tests etc. I was put through were excellent’. The first patient

also said however, that there was ‘…not time enough for discussion…’ and that it was ‘…

difficult for me to deal with everything with my short term memory loss, agitation, and lost

concentration’. One patient, whilst positive about the care received, commented that ‘…

there was little support…’ and that she ‘…would have loved to talk about it, and was quite

scared at the time not having a diagnosis or knowing if another (seizure) would occur.’

Commenting on possible improvements to the clinic, one patient suggested that the service

providers should ‘…round off the interview with some specific advice about ways to deal

with the problem.’

In the intervention group the negative and positive responses were similar to the control

group but approximately 45% of the responses specifically included a mention of either the

Epilepsy Foundation worker or the pamphlets which they provided. One person specifically

made mention that it was good ‘…to be able to talk to someone with epilepsy’. Other

responses from this group included many comments about the relaxed atmosphere, the fact

that people listened to them, provided advice, attention, kindness, and understanding.

In their own words, one patient said ‘…a worker from the Epilepsy Foundation explained

a lot of things to me and rang me…to check up on my condition and answer any questions

I had’. Another said it was good ‘…being given a simple understanding about seizures

162


and how it can, but not necessarily, affect your lifestyle…and also just ways to avoid your

seizures.’ One person commented that they ‘…felt comforted and cared about….not made

to feel belittled in any way.’ Another spoke of the ‘…reassurance – normalising different

seizures’. Another patient noted that the clinic had been ‘…a comfortable atmosphere to

ask questions and to have a family member with you as they are learning to cope too.’ One

patient noted that ‘…people were interested in listening, then helpful when I was not sure

of anything.’ Another summed up his experience as follows, ‘It might be a good idea to

remember that it’s a bit scary for the person it has happened to. Hard thing to take in all at

once. The Epilepsy Foundation has it all worked out though. Many thanks to them all.’

9.7.2.2 Responses – twelve months

At twelve months there was only one open-ended question – are there any other comments

you would like to make about health care related to seizures or blackouts, that you have

received in the last twelve months? Very few participants chose to make a response. From

the 32 control group questionnaires received, there were 5 (16%) with comments, and from

the 42 intervention questionnaires received there were 17 (40%) with comments.

Most of those patients who did respond simply gave an update on how they were

progressing. Some expressed ongoing frustration about the lack of improvement or clarity

regarding their condition, or ongoing health problems, while others noted they were doing

well. Several noted the importance of good ongoing support and suggested that it can be

hard to find. For example, one person said, ‘I understand this is a difficult field for any

general practitioner to get on top of with a patient and it seems as though it falls into the

area of a specialist role.’ Another said ‘my GP has …taken extra effort to learn more about

epilepsy and to help me deal with it better.’

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9.8 Summary

This chapter has presented the results of the RCT nested within the overall study of First

Seizure Clinic patients, beginning with a brief review of the RCT framework and the

outcome measures. The seizure/epilepsy cohort as a single group was then described, noting

the unique opportunity which such a cohort offers for the investigation of new-onset seizure

patients, and a comparison with external data was put forward. The comparison highlighted

similarities between the First Seizure Clinic data and the data which was recently collected

in a large European study of new-onset seizure patients (Jacoby et al., 2007).

The RCT study groups were next described and no differences between the groups were

found for gender or social background. The mean age of the control group was significantly

higher than the intervention group at all three time points. However, because age was found

to have a shared variance of only approximately 2% with two of the variables in this study, it

was not included as a factor in the RCT analyses.

The RCT was evaluated in three parts. Firstly, the eight measures of psychosocial well-being

and adverse medication effects were examined. There were significant changes in only three

variables with falls in the mean scores over twelve months for past worry, future worry and

LAEP. Notably however, the longitudinal data showed no differences in the rate of change

between the control and intervention groups at three months or at twelve months.

Secondly the sources of information utilized by participants were compared at three months.

Both groups indicated that the GP was a primary source of information. However, the

intervention group indicated that the support worker had been a frequent source of helpful

information, more often used than any other source including the GP.

Thirdly, subjective patient responses to the service provided by the clinic were evaluated.

The service satisfaction scale indicated a moderately satisfied response to the clinic service

by both groups and no significant changes to this attitude in either the control and

intervention group over the period of the study. The open-ended questions at three and

164


twelve months revealed a generally positive response to the clinic by participants in both

study groups, with the role of the support worker acknowledged by the intervention group

as a useful and helpful resource. The presence of the worker or the resources they provided

were mentioned positively by forty-five percent of the intervention group respondents at

three months.

Chapter 10 now follows as the third and final results chapter. The data presented therein

develops a line of investigation regarding the Liverpool Adverse Events Profile (LAEP)

triggered primarily by the results presented in chapter 8.

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Chapter 10

Results 3: An investigation into the Liverpool Adverse EventsProfile

10.1 Introduction

Chapter 10 is the third and final results chapter of this thesis. It evaluates the Liverpool

Adverse Events Profile (LAEP) in new-onset seizure/epilepsy patients, examining the

relationship between LAEP, AED status, anxiety, and depression. It begins by outlining

the rationale which underpins the investigation (10.2). Then follows an explanation of the

study framework (10.3) and a discussion of the outcome measures (10.4). Descriptive data

are provided (10.5) and a summary of the AEDs which were prescribed to those in the study

(10.6). The evaluation results are presented in six parts (10.7) and the chapter concludes with

a summary of chapter 10 and a preview of chapter 11 (10.8).

10.2 Rationale for LAEP investigation

Chapter 10 develops a line of investigation suggested by the results reported in chapter 8. In

that chapter the results of eight measurement scales, including the Liverpool Adverse Events

Profile (LAEP), were compared between the four diagnostic categories of the First Seizure

Clinic study, and no outcome differences were revealed between the groups. This may be

because, regardless of diagnosis, the outcome measures evoked similar patient responses.

Such an explanation is credible when general measures are concerned (general health,

GQoL, past worry, future worry, anxiety, depression, and perceived stigma). However,

LAEP is designed to specifically measure the adverse effects of AEDs, and because the use

of AEDs is related to diagnosis (and associated treatment), the lack of difference in LAEP

scores between the diagnostic categories was not expected. Adverse effects are usually

anticipated in many patients who begin AED treatment (2.8.3), and therefore differences

in LAEP scores between seizure and non-seizure diagnostic categories would be expected

to reflect this at three and twelve months. In addition, correlations indicated a very strong

166


relationship between LAEP and the HADS (anxiety and depression) measures, raising the

question of whether LAEP scores were actually reflecting anxiety and depression rates

rather than the adverse effects of AEDs.

The unexpected outcomes identified with the LAEP scale were revealed because of the

unique First Seizure Clinic study sample and design. Participants included patients who

were not taking AEDs as well as those who were, but all completed the LAEP. In addition,

as a prospective study with baseline measures, it was also possible to observe changes in

the LAEP scores over time in the first months of treatment. Both global LAEP scores and

individual symptom reporting could be evaluated for the effect of AED treatment, and also

for their relationship to scores of anxiety and depression.

10.3 Framework of the study

From the total cohort of the overall First Seizure Clinic study (N = 245) the LAEP

evaluation presented in this chapter included only patients classified as (i) single or provoked

seizure (N = 82), or (ii) epilepsy (N = 85) (total N = 167). Although patients from the

categories of syncope and ‘other’ had also completed the LAEP, this analysis focusses only

on patients with a seizure-related diagnosis, to limit the possible confounding effect of

diagnosis. Of the seizure and epilepsy patients, only those who commenced AED treatment

and continued treatment through to the 3-month assessment point, or were not prescribed

AEDs in the first three months of their care, were retained. Consequently, two patients who

started AEDs and stopped in the first three months were excluded, leaving 165 patients in

the sample at baseline. From this sample, 103 (62%) participants returned 3-month data

thereby qualifying for the longitudinal sample. Figure 4 provides a flowchart for the study.

167


Figure 4. LAEP study flowchart

LAEP, Liverpool Adverse Events Profile; HADS, Hospital Anxiety and Depression Scale* Exclusions and refusals are detailed in Chapter 7 (7.2.8.1)† Withdrawal and loss are discussed in Chapter 8 (8.3.2)

First Seizure Clinic recruitment: Nov 2001– August 2004Patients with no prior known epilepsy N=297

Baseline [B/L] enrolments N=245

Exclusions* N=13Refusals* N=39

Syncope & OtherN=78

3 MonthsEpilepsy & SeizureN=103 (62% of B/L)Repeated measure

sample for LAEP study

Epilepsy & Seizure withdrawn / lost† or LAEP / HADS data

omitted N=62

Epilepsy & Seizure unsuitable due to AED

start/stop N=2

Epilepsy & SeizureN=167

Group A N=31Start AEDs in FSC

Epilepsy & SeizureN=165

Group B N=23Start AEDs pre-FSC

Group C N=49No AEDs

Group A (AEDs prescribed in FSC)

N (%)

Group B (AEDs prescribed pre-FSC)

N (%)

Group C(no AEDs prescribed)

N (%)

Total repeat sample

Isolated seizure 1 (3.2) 4 (17.4) 43 (87.8) 48

Epilepsy 30 (96.8) 19 (82.5) 6 (12.2) 55

Total 31 (100) 23 (100) 49 (100) 103

Table 23. LAEP study groups

AEDs, antiepileptic drugs; FSC, First Seizure Clinic

Participants were divided into three categories on the basis of AED treatment: Group A

contained patients prescribed AEDs at the initial First Seizure Clinic assessment, or within

the three months following; Group B patients had commenced AEDs before attending

the First Seizure Clinic, prescribed by the referring practitioner (usually in the Emergency

Department) at time of the initial presentation, as an interim measure while awaiting a First

Seizure Clinic referral; Group C patients did not take AEDs during the study period. Table

23 shows the distribution of diagnoses within the study groups.

168



The outcome measures utilized in these analyses are the Liverpool Adverse Event Profile

(LAEP) and the Hospital Anxiety and Depression Scale (HADS). The Liverpool Adverse

Event Profile (LAEP) is a measure developed to quantify patients’ perceptions of symptoms

which may be the side-effects of AED treatment. A detailed description can be found in

chapter 7 (7.2.10.8). LAEP is presented as a checklist of symptoms, and this was given to all

study participants regardless of diagnosis or AED status. There was no indication within the

questionnaire that the symptoms listed might be due to the use of medication.

The HADS is a self-report measure of anxiety and depression symptoms developed for use

in a hospital outpatient setting. A detailed description of the scale can be found in chapter 7

(7.2.10.6). Both scales met assumptions of normality (8.2.2).


One hundred and sixty-five patients qualified at baseline for the study. The mean (± SD)

age was 36 (± 16) years and 65% were male. The distribution of participants between the

three AED treatment status groups was as follows: Group A, N = 51 (31%), Group B,

N = 34 (21%), Group C, N = 80 (48%). The distribution of diagnoses within each of the

three groups differed significantly (Chi-Square (2) = 102.6, p < .001), with the diagnostic

categories for Group A & B consisting predominantly of patients with epilepsy, while Group

C consisted mainly of patients who had experienced an isolated or provoked seizure. There

were no significant differences in mean age or gender between the groups. At three months

103 (62%) participants provided follow up data. The mean (±SD) age of these respondents

was 37.5 (± 17) years and 62 % were male. The AED categories were Group A, N = 31

(30.1%), Group B, N = 23 (22.3%), and Group C, N = 49 (47.6%). The participants providing

3-month data (N = 103) comprised the longitudinal sample on which all further analyses

were based. Table 23 shows the distribution of diagnoses within each group for the repeat

sample (N = 103).

169


10.6 AED use

There was no formal protocol in the First Seizure Clinic for the type or dose of medication

to be commenced, with the treating neurologist selecting the treatment regime, as described

in chapter 7. In the repeat sample (N = 103), the AEDs used in the patients who commenced

medication after the First Seizure Clinic assessment (Group A) were: phenytoin (N = 3),

valproate (N = 14), and carbamazepine (N = 14). In the first three months of treatment,

one female patient changed from valproate to lamotrigine and one male patient was

changed from carbamazepine to phenytoin and then to valproate. In patients who were

prescribed AEDs prior to attendance at the First Seizure Clinic (Group B), the medications

were phenytoin (N = 15), phenytoin with carbamazepine (N= 1), valproate (N = 4), and

carbamazepine (N = 3 ). In the first three months following the First Seizure Clinic

assessment, drug switches in these patients were: phenytoin to valproate (N = 2), phenytoin

to carbamazepine (N = 3), phenytoin and carbamazepine reduced to phenytoin only,

valproate to lamotrigine (N = 1), carbamazepine added to valproate (N = 1).

10.7 Evaluation

10.7.1 LAEP – Symptom frequency

Figures 5, 6 and 7 present data from participants who completed LAEP at both time

points (N = 103). Figures 5 and 6 plot the frequency at which each symptom was reported

sometimes or always at baseline and at three months. They demonstrate the similar pattern

of symptom reporting at both time points for all three groups.

Figure 7 plots the percentage change in symptom frequency reports over three months.

In Group A (AEDs commenced after the First Seizure Clinic baseline assessment) the

frequency rate increased from the baseline assessment for twelve symptoms. For one

symptom the increase was greater than 10% (shaky hands). In seven symptoms the

increase was between 5% and 10% (unsteadiness, restlessness, headache, upset stomach,

concentration difficulties, memory difficulties and disturbed sleep). In Group B (AEDs

170


0 10 20 30 40 50 60 70 80 90 100

unsteadiness

tiredness

restlessness

aggression

nervousness

headache

hair loss

skin

blurred vision

upset stomach

concentration

mouth/ gums

shaky hands

w eight gain

dizziness

sleepiness

depression

memory problems

disturbed sleep

% symptoms reported always or sometimes (baseline)

Group A AEDsstarted in FSC Group B AEDsstarted pre-FSC Group C No AEDs

Figure 5. LAEP study symptoms at baseline – association of patient reported LAEP symptoms with AED status in repeated measures sample (N = 103)

0 10 20 30 40 50 60 70 80 90 100

unsteadiness

tiredness

restlessness

aggression

nervousness

headache

hair loss

skin

blurred vision

upset stomach

concentration

mouth/ gums

shaky hands

w eight gain

dizziness

sleepiness

depression

memory problems

disturbed sleep

% symptoms reported always or sometimes(3 months)

Group A AEDsstarted in FSC Group B AEDsstarted pre-FSC Group C No AEDs

Figure 6. LAEP study symptoms at three months – association of patient reported LAEP symptoms with AED status in repeated measures sample (N = 103)

FSC, First Seizure Clinic; AEDs, antiepileptic drugs


171


prescribed prior to the baseline assessment) the frequency rate was increased for ten

symptoms, with three greater than 10% (hair loss, memory difficulties and disturbed sleep),

and four between 5% and 10% (tiredness, aggression, double or blurred vision and weight

gain). In Group C (no AEDs) the frequency rate was unchanged for one symptom (skin

problems) and fell for all other symptoms except ‘weight gain’ which rose by 2.1%. A Chi-

square test showed that the number of symptoms which increased compared to the number

which did not, was significantly different for Group C (no AEDs) compared to Groups A

and B (Chi-Square (2) = 15.03, p < .001). In Group C, fewer symptoms increased compared

to the other two groups, as would be expected.

-30 -20 -10 0 10 20

unsteadiness

tiredness

restlessness

aggression

nervousness

headache

hair loss

skin

blurred vision

upset stomach

concentration

mouth/ gums

shaky hands

w eight gain

dizziness

sleepiness

depression

memory problems

disturbed sleep

% change in symptom reports over 3 months

Figure 7. LAEP study symptom changes over three months – comparison of changes in the frequency of patient reports for each LAEP symptom according to AED status (N = 103). Reports increased in Group A for 12 symptoms, in Group B for ten symptoms and in Group C for one symptom.

Group A AEDS started in FSC

Group B AEDS started pre-FSC

Group C No AEDs


172


10.7.2 LAEP – global scores

The mean LAEP score at baseline (N = 103) was 38.1 (±11.1). A one-way ANOVA showed

no significant difference between the mean LAEP scores of the three AED groups at

baseline, F(2,100) = 1.03, p > .05. Table 24 shows the mean scores of the three AED groups

at baseline and three months, for the repeated measures sample. A repeated measures

ANOVA (mixed between-within subjects ANOVA) showed no significant change in the

mean LAEP score over three months for the cohort as a whole, F(1,100) = .20, p > .05, and

no significant differences in the rate of change between the AED groups F(2,100) = 2.27,

p > .05. Although not significant, the direction of change for each of the groups was as

expected. Both groups A and B using AEDs increased their mean LAEP score, whilst

group C (no AEDs) mean LAEP score was reduced.

10.7.3 HADS scores

A one-way ANOVA showed no significant differences at baseline between the AED

groups for either anxiety, F(2,100) = .82, p > .05 or depression, F(2,100) = .83, p > .05 scores.

Table 24 shows the mean HADS scores of the three groups at baseline and three months.

A repeated measures ANOVA showed no significant change over three months in the

HADS anxiety scores of the cohort as a whole, F(1,100) = .02, p > .05, or for the AED

groups, F(2,100) = 1.75, p > .05. Similarly, there were no significant changes in the HADS

depression scores of the cohort over three months, F(1,100) = .06, p > .05 or for the AED

groups, F(2,100) = 1.14, p > .05.

173


10.7.4 Correlations between AED status, LAEP, and HADS

The correlations between global LAEP scores at baseline (N = 103) and key variables

were: HADS anxiety, r = .72, p < .001; HADS depression, r = .59, p < .001; drug status

(0 = no AEDs, 1 = on AEDs at baseline), r = .12, p > .05. The correlations between LAEP

at three months (N = 103) and key variables were: HADS anxiety, r = .81, p < .001; HADS

depression, r = .67, p < .001; drug status (0 = no AEDs (Group C), 1 = AEDs in First Seizure

Clinic (Group A), 2 = AEDs pre-baseline (Group B), r = .25, p < .05.

HADS anxiety and depression scores were highly correlated with each other at both

baseline (r = .68, p < .001) and three months (r = .74, p < .001).

10.7.5 Predicting LAEP scores

Multiple regression analysis was performed to attempt prediction of LAEP scores from

anxiety, depression and drug status. Prior to the analysis the assumptions for multiple

regression were checked and found to have been met. However, because anxiety and

depression scores were so highly correlated, sharing approximately 50% of the variance

at both baseline and three months, only anxiety was entered into the regression equation

to avoid problems with multicollinearity. (Tabachnick & Fidell, 1996). When the baseline

Table 24. LAEP study – mean LAEP and HADS scores for longitudinal sample (N = 103)

Group AAEDs in FSC

N = 31

Group BAEDs pre FSC

N = 23

Group CNo AEDs

N = 49

Cohort

N =103

LAEP B/L: mean (SD) 36.1 (9.9) 40.5 (12.1) 38.1 (11.3) 38.1 (11.1)

LAEP 3M: mean (SD) 37.2 (11.8) 43.2 (10.0) 35.8 (10.5) 37.9 (11.1)

HADS Anxiety B/L: mean (SD) 6.2 (4.3) 7.7 (6.0) 7.6 (5.2) 7.2 (5.2)

HADS Anxiety 3M: mean (SD) 6.6 (5.5) 8.3 (4.7) 6.4 (5.3) 6.9 (5.2)

HADS Depression B/L: mean (SD) 4.6 (4.1) 5.8 (4.5) 4.5 (3.7) 4.8 (4.0)

HADS Depression 3M: mean (SD) 5.1 (4.7) 5.8 (4.1) 3.7 (3.3) 4.6 (4.0)

LAEP, Liverpool Adverse Events Profile; HADS, Hospital Anxiety and Depression ScaleB/L, Baseline; 3M, three months; AEDs, antiepileptic drugs; FSC, First Seizure Clinic

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HADS anxiety scores (N = 103) were entered into a standard multiple regression with AED

status at baseline, the model explained 51.6 % of the variance in baseline LAEP scores,

F(2,100) = 53.33, p < .001. Anxiety made a unique significant contribution ( β = .71) to the

baseline LAEP score while AED status did not (nor was it correlated with LAEP). When

the 3-month HADS anxiety scores (N = 103) were entered into a multiple regression with

AED status at three months, the model explained 68.3% of the variance in LAEP scores

at three months F(2,100) = 107.77, p < .001. Again, the anxiety scores made a large unique

significant contribution ( β = .79), with AED status at three months making a significant but

small contribution ( β = .15).

10.7.6Relationofanxietyanddepressiontospecificsymptomreporting

One-way multivariate analyses of variance (MANOVAs) were applied to investigate

differences in the reporting rates of the 19 LAEP symptoms by levels of both anxiety and

depression. Prior to the analysis the assumptions for MANOVA were checked and found

to have been met. The LAEP symptoms were the dependent variables and the independent

variables were the level of anxiety or level of depression (case, borderline, non-case). There

was a significant difference at baseline (N = 103) between the anxiety groups on the combined

dependent variables [F(38,164) = 3.53, p < .001] Wilks Lambda = .302, partial eta squared

= .450, and also the depression groups [F (38,164) = 1.86, p < .01] Wilks Lambda = .488,

partial eta squared = .301. In addition, MANOVAs at three months showed significant

differences in reporting rates between the anxiety groups [F(38,164) = 3.71, p < .001] Wilks

Lambda = .289, partial eta squared = .462 and also the depression groups [F(38,164) = 1.98,

p < .01] Wilks Lambda = .470, partial eta squared = .314. Higher rates of symptom reporting

were related to higher levels of anxiety and depression. When the results for the dependent

variables were considered separately (using a Bonferoni adjusted alpha level of .003)

there were only three symptoms which were not significantly related to either anxiety or

depression at either time point: headache, hair loss and trouble with mouth or gums.

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10.8 Summary

This chapter has presented the results of a study designed to evaluate the effectiveness of

LAEP as a measure of AED adverse effects in newly diagnosed seizure patients. The study

examined the relationship between LAEP, AED status, anxiety, and depression. Using a

sample of seizure patients, some of whom were taking AEDs and some of whom were not,

LAEP and HADS data were measured at baseline and three months. This allowed for a

longitudinal evaluation of LAEP and HADS taking account of patient AED status.

LAEP was first examined as a symptom by symptom frequency measure, with the pattern

of symptoms found to be similar for all groups regardless of AED use. Tiredness, for

example, was the most common symptom reported by every group at both time points.

Looking at change over three months and comparing the outcomes of the three study

groups, differences between the groups were seen. Increased frequency rates of greater

than 5% were reported for eight symptoms in Group A (patients started on AEDs after

First Seizure Clinic consultation) and seven symptoms in Group B (patients on AEDs prior

to First Seizure Clinic consultation). For participants who did not use AEDs (Group C),

the frequency rates reported fell for 17 of 19 symptoms. This could be taken to imply that

AEDs were responsible for the increase in symptom reporting. However, it is necessary

to note that Group C (untreated patients) also differed from Groups A and B in that it

contained a high percentage of patients in the diagnostic category of single or provoked

seizures, while Groups A and B contained a majority of patients who were diagnosed as

having epilepsy ( Table 1). (This is to be expected as current practice in Australia (2.8.1) is to

generally reserve AED treatment until the patient has experienced two or more unprovoked

seizures). Therefore, the increased symptom reporting rates in Groups A and B cannot be

assumed to reflect AED treatment effect alone; the possible effects of epilepsy, reactions to

the diagnosis and reactions to the fact of treatment, all need to be considered.

As a global score, LAEP showed only a small correlation with AED status whereas, in

contrast, there was a large correlation between the global LAEP and the two HADS

subscales, particularly the anxiety subscale. Multiple regression analysis confirmed that

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anxiety scores were the major predictors of global LAEP at both baseline and three

months. To assess whether individual symptoms related to mood were weighting the LAEP

scores and whether extraction of those items would enhance the performance of LAEP,

MANOVAs were used to compare the impact of anxiety and depression levels on the

reporting rate for each specific symptom at both time points. Using very conservative levels

of significance set at .003 most symptom reporting was found to be highly correlated with

anxiety and depression. Only three symptoms were consistently unrelated to both anxiety

and depression: headache, hair loss and trouble with mouth or gums. These three items

alone would not constitute an adequate measure of AED adverse effects.

In summary, in First Seizure Clinic patients LAEP was shown to be more informative

when used as a repeated measure of specific symptoms than as a global score. Even so,

the constructs assessed by the LAEP were largely reflected in measures of anxiety and

depression. The implication of these findings are discussed further in chapter 11.

This chapter completes the results section of the thesis. Chapter 11 now offers a general

discussion of the First Seizure Clinic study findings, conclusions and recommendations.

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Chapter 11

Discussion and Conclusions

11.1 Introduction

Chapter 11 brings the thesis to its conclusion. Beginning with a review of the aims of the

First Seizure Clinic study (11.2), and a summary of the outcomes (11.3), consideration is then

given to the strengths and limitations of the project (11.4–11.5), followed by a discussion of

the implications of the results (11.6). The chapter concludes with recommendations arising

from the study, and possible research directions (11.7–11.8)

11.2 Review of study aims

This thesis has addressed issues of diagnosis and management of seizure patients through its

examination of psychosocial characteristics of First Seizure Clinic patients at diagnosis and

follow up, and through its evaluation of a patient support program for a subgroup of these

patients.

The thesis is based on three broad aims:

to assess a range of psychosocial factors in patients who have experienced a possible •

first seizure and been referred to a First Seizure Clinic, in order to establish the level of

psychosocial well-being at baseline, 3 months and twelve months. By including all clinic

patients regardless of the eventual diagnosis, the data can facilitate not only longitudinal

analysis of seizure patients, but also internal comparison of outcomes between patients

with seizure-related, and non seizure-related diagnoses.

to evaluate the effect of a patient support program on the psychosocial outcomes for •

First Seizure Clinic patients with a seizure-related diagnosis.

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In addition to these two primary aims, early results of the study led to the development of

an additional supplementary aim:

to evaluate the Liverpool Adverse Events Profile (LAEP) as a measure of the adverse •

effects of antiepileptic drugs (AEDs) in patients with a seizure-related diagnosis.

11.3 Summary and discussion of study outcomes

11.3.1 Chapter 8

The first aim of the thesis was addressed in chapter 8 and it is here that the First Seizure

Clinic cohort was introduced and described (N=245). Looking initially at the cohort as

a whole, with all diagnostic categories included, the patients ranged in age from 16 to 86

years. Nevertheless with a mean age of 36.5 (±15.9) years the data indicated that, as an

adult sample, the cohort was relatively youthful and there were no differences in mean age

between the four diagnostic categories.

Two thirds of the cohort was male, and as with age, there were no differences between

the four diagnostic categories in gender breakdown. The imbalance of gender was not

due to differing rates of exclusion/refusal (7.2.8.1), or withdrawal/loss (8.3.2). In trying

to assess whether gender balance was somehow unique to the First Seizure Clinic setting,

comparisons were made with Victorian emergency department admissions data (Victorian

Government Department of Human Services, 2007) and Australian public hospital

admissions data (AIHW, 2008). For both, the gender distribution was around 50% male/

female overall, offering no explanation for the gender distribution of the First Seizure Clinic

cohort.

Where studies have looked specifically at seizure-related admissions to hospital, males are in

the majority in particular age groups despite that fact that epilepsy has only a slightly higher

incidence in males than females (Mathern, 2006). In a study of avoidable hospitalizations

in 2001–2002, the ‘convulsions and epilepsy’ category was the most common cause of

admission for males, aged 15–24 years, and the second most common cause for males 24–

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44 years. In both age groups the proportion of males admitted was significantly higher than

females (Page et al., 2007). Another study of young Australians aged 12–24 years, which

looked specifically at epilepsy, suggested that males were more likely to be hospitalized for

epilepsy than females, especially in the 20–24 year age group where the male rate was on

average 1.4 times as high as for females (AIHW, 2007). It appears the distribution of males

amongst the First Seizure Clinic seizure patients resembles that of seizure-related hospital

admissions, although the reasons are not immediately apparent.

Looking specifically at those patients with a seizure-related diagnosis (N=167) the

demographic characteristics reflected those of the overall First Seizure Clinic cohort. Ages

ranged from 16–86 with a mean age of 36 (±16) years and 65% were male. These figures

underline the fact that seizures can commence at any age. They also indicate that, in an adult

population of new onset seizures, a large percentage of the patients can be expected to be

young adults. Other studies of early seizures have found similar demographic patterns to

those in the First Seizure Clinic study. An ongoing study of First Seizure Clinic patients in

Western Australia (Kho, Lawn, Dunne, & Linto, 2006), has recorded 1136 adults confirmed

with a first seizure for whom the median age is 36 and 61% are male (N. Lawn, personal

communication, November 22, 2008). The First Seizure Clinic study by Velissaris (2007),

also an Australian study, of recently diagnosed seizure/epilepsy patients (N=90) found a

mean age of 36 (±13) years and 60% males. Data from a European study of patients with

a single or few new-onset seizures (N=331) reported the median age as 35 with 59% male

(Jacoby et al., 2007). Each of these studies varies in relation to exclusion criteria and timing

of the study in relation to diagnosis and treatment. Nevertheless the cohorts are sufficiently

alike to allow some comparison. It is of interest that they reflect the observations of the

current research and, regardless what leads to the gender disparity, underline the necessity

to consider whether demographic issues of age and gender require specific attention in

relation to seizure support services, especially given that the study of men’s health suggests

that males may be less likely than women to seek help for health issues (Galdas, Cheater, &

Marshall, 2005).

When the First Seizure Clinic cohort was stratified into four broad diagnostic categories,

results indicated that approximately 30% of patients referred to the clinics were ultimately

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assigned a non-seizure diagnosis. Again, this figure is very similar to that recorded in

another large Australian First Seizure Clinic database (N. Lawn, personal communication,

November 22, 2008). International research suggests that in many treatment settings non-

seizure patients can go unrecognized, with studies demonstrating high rates of epilepsy

misdiagnosis (Leach et al., 2005; Scheepers et al., 1998). However, categorization of

patients referred to the First Seizure Clinic suggests that the setting supports successful

discrimination between seizure and non-seizure patients. Two of the conditions most

frequently misdiagnosed as seizures are syncope and psychogenic attacks (Hopkins, 1995b;

Krumholz, 1999; Scheepers et al., 1998) and of the First Seizure Clinic referrals identified

as non-seizures, it is notable that, approximately 40% were diagnosed as syncope cases. The

remainder were classified as ‘other’, a group which included, for example, cardiac events,

episodes related to psychiatric factors, or undiagnosed symptoms. Of the seizure-related

diagnoses approximately half were considered to be epilepsy with the other half classified as

single seizures.

The psychosocial measures for the First Seizure Clinic cohort as a whole revealed that

correlations at all time points demonstrated general alignment between the measure for

ill-being and the measures for well-being. The strongest positive correlation was between

past worry and future worry. Anxiety, depression, stigma and LAEP were also positively

correlated. The strongest negative correlation was between depression and global quality of

life (GQoL). By these results the measure demonstrates pleasing convergent validity. The

strong correlation between LAEP and measures of anxiety and depression seemed logical

at this point of the study analysis, based on the assumption that all three might be elevated

in conjunction with AED use. However as the analyses progressed and comparisons were

made between diagnostic (and hence treatment groups) some question emerged which are

discussed below (11.3.3).

Notable findings, for the cohort as a whole, were the levels of anxiety and depression. At

baseline, the percentage of people identified with clinical levels of either condition was

approximately twice the percentage of people identified with these conditions within the

Australian community (ABS, 2008). Clearly, the experience of a possible seizure is one

which carries with it high levels of negative arousal, regardless of the subsequent diagnosis.

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For depression, the category of ‘other’ had significantly more depression cases (HADS

score 11–21) and borderline cases (HADS score 8–10) combined, than any of the alternative

diagnostic categories. This is perhaps to be expected as a number of these individuals

had symptoms that were poorly explained by identifiable organic causes and such patients

have been shown to have increased rates of anxiety and depression (Carson et al., 2000;

Henningsen et al., 2003; Herrman & Chopra, 2009).

Using a repeated measure sample to assess longitudinal change for the cohort as a whole,

general health and GQoL were seen to dip slightly at three months returning almost exactly

to baseline levels at 12 months. Stigma also varied very little with some upward movement.

Mean scores for HADS anxiety and depression suggested a small downward movement for

both, after a slight increase in depression at three months. However examination of anxiety

and depression using the HADS case levels revealed that both anxiety and depression cases

(HADS score 11–21) as well as depression borderline cases (HADS score 8–10) had actually

risen at three months and although, at 12 months, both anxiety and depression cases had

returned to baseline levels, both anxiety and depression borderline cases were higher than

baseline levels. So, despite the mean scores falling, in real terms cases remained the same

and borderline cases had risen.

Two mean scores which did alter significantly over 12 months were past worry and future

worry. Both scores fell, with the greatest fall occurring in the first three months. This is in

contrast to the relative stability of the variables mentioned earlier. The changes were not

related to age or gender, nor were they related to diagnosis. Certainly it has been noted in

a recent study of new-onset seizure patients, that even where there was an initial period

of increased fear of seizure recurrence, increased awareness of vulnerability, and mood

disturbance, most patients returned to normal psychological functioning by three months

(Velissaris, 2007). However in the current study, changes in worry were independent of

anxiety and depression, which did not drop. The cohort as a whole was a complex mix of

seizure and non-seizure diagnoses and it would also appear that the reduction in worry was a

common response across all diagnostic groups. Perhaps reduction in worry is an adjustment

which could be expected in most patients, with the passage of time, following what could be

perceived as a traumatic event. For example as described by Taylor (1991), negative (adverse

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or threatening) events can usually be expected to evoke a ‘…strong and rapid physiological,

cognitive, emotional and social responses’ in human beings. However, once the threat of

the negative event subsides, a common response is the development of processes that ‘…

reverse, minimize or undo the responses elicited at the initial stage of responding’ (Taylor,

1991). Whether the style of the clinic in its communication, information provision, or

clinical approach has facilitated or enhanced this decrease in worry by perhaps addressing

uncertainty in all patients regardless of diagnosis, cannot be known from the available data.

Qualitative interviews may offer more insight. In addition the fact remains that while worry

fell significantly, anxiety and depression rates remained fairly stable through the cohort.

The LAEP score also fell significantly for the cohort over 12 months, however since this

scale is supposed to indicate the adverse effects of AED medication, and not all participants

were using AEDs, interpretation of the score required further analysis by diagnostic

category.

Having considered the outcomes over 12 months for the cohort as a whole longitudinal

changes were analyzed by diagnostic category. No significant time by diagnostic

category interactions were found for any of the variables. Contrary to expectations, and

acknowledging that most of the key psychosocial measures were somewhat generic rather

than seizure specific, the levels of ill-being measured were no greater in the seizure or

epilepsy groups than any other diagnostic category.

In the case of LAEP however, the measure is specifically designed to assess symptoms

indicating adverse effects of AEDs and differences are expected between groups of patients

with a seizure related diagnosis who take AEDs and those who do not. However in this

analysis the LAEP global score did not discriminate between the diagnostic categories,

raising questions about the scale and prompting further investigation (chapter 10).

As mentioned above, there were no statistical differences between the four diagnostic

categories for age and gender distribution, so in further analyses differences between the

groups if noted, were not a function of age or gender.

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11.3.2 Chapter 9

The second aim of this thesis was to evaluate the effect of a patient support program on the

psychosocial outcomes of First Seizure Clinic patients with a seizure-related diagnosis, using

a randomized controlled trial (RCT). The outcomes of this investigation were presented

in chapter 9. Taking an overview of total seizure/epilepsy sample (N=167), it was apparent

that the outcomes for the eight key variables were similar to those for the overall First

Seizure cohort, as discussed in chapter 8, with relatively stable scores for five variables and

significant reductions in past worry, future worry and LAEP.

Within this seizure/epilepsy cohort (N=167), having randomly selected a control and

intervention group, the eight key variables were evaluated using a repeated measure sample

(N=74) to compare the outcomes between the two groups. It was hypothesized that, in

relation to a control group, the intervention group would show greater improvement on

their baseline scores for general health, GQoL, past worry, future worry, anxiety, depression

and perceived stigma at both three months and twelve months post-test periods. In regard

to the effect of the support program, although there were reductions in past worry and

future worry, as well as in LAEP, for the overall cohort, the hypothesis was not supported as

there were no differences in the rate of change between the control and intervention groups

for any of the key variables. Possible reasons for the reduction in worry have been discussed

above. As noted, the reduction in worry occurred across the entire First Seizure Clinic

cohort and was not related to the intervention. The fall in the LAEP score was seen to be of

uncertain value as discussed earlier and will be further examined below.

To further explore the effect of the patient support service the RCT sought to distinguish

any differing patterns of health information seeking between the control and intervention

groups which may have occurred during the course of the study. Firstly, putting aside the

role of the support worker and comparing the use of various other resources, both groups

were found to have exhibited a very similar pattern of information seeking, with the

most frequently used sources including the general practitioner (GP), family and friends,

health professionals, someone with a similar condition, the EEG staff and the internet.

The sources which were less frequently used included the Epilepsy Foundation of Victoria

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(EFV), libraries, and telephone services. This pattern of use conforms to the theory of

Harris and Dewdney (1994) who suggest that people have a preference for information

which is the most accessible, and preferably accompanied by emotional support.

In addition to the range of information options described above, the intervention group had

access to the EFV support worker. It was striking that, over and above the use of resources

already described, the EFV worker was reported to be the most commonly used and almost

always helpful. In contrast, the control group were offered an EFV information card with

contact details by the doctor to assist them in obtaining additional information should they

so desire, but this option was taken up only by a minority. Again, reflecting on the theory

of Harris and Dewdney (1994), it is apparent that having a resource such as the worker

actually available in the clinic, and providing support on an individual basis, appears to be a

very appealing option to participants. Access to a support worker did not change the overall

pattern of information seeking in the intervention group, as mentioned above, with these

patients still utilizing the same range of sources as the control group including to a large

extent the (GP).

As was noted in the results (9.6) a number of the control group participants also identified

having had contact with the support worker although in fact this was rarely the case unless,

as described in chapter 7 (7.3.2), there were exceptional circumstance where the doctor

felt that support was essential. If this occurred, patients were nevertheless included in the

analysis on an intention to treat basis, and any effect on results would be minor. The most

likely cause of control patients perceiving that they had received the service of a support

worker was the recruitment interview where, in the process of inviting patients to participate

in the study, it was necessary for the researcher to spend some time with each person

explaining the overall operation of the First Seizure Clinic. It is possible that some control

group patients interpreted this brief attention as a level of support. Even allowing for that

same influence to affect the intervention group, a very strong additional positive response to

the support worker still exists within the intervention group.

Despite the very clear result indicating frequent use and high satisfaction with the support

worker, the support service did not lead to different outcomes for the two groups as

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measured by the eight key variables at either time point. It may have lead to other benefits

for patients but we do not know. For example, perhaps the service provided a useful

intermediary educational step which enhanced patient interaction with their GP or other

health professionals, improved adherence to medication, or reduced reliance on, and visits

to, health services or hospitals.

To compare differences in patient attitudes to the overall clinic service a quantitative

measure, the service satisfaction scale, was used to assess patient levels of satisfaction

with the consideration of their individual needs and the opportunities to participate in

decision making which they experienced at the clinic. Despite the fact that the intervention

group was provided with a support worker, the similarity in the scores for the two groups

was remarkable. In the repeated measure sample, the scores for both groups were almost

identical and reflected a weakly positive response to the clinic care. There was a small

positive correlation of the service satisfaction scale with measures of well-being such as

general health and GQoL, and a small negative correlation with measures of ill-being such

as worry, anxiety and depression. At three months there was a notable strongly negative

correlation with perceived stigma. This correlation of negative opinions with ill-being and

positive opinions with well-being makes intuitive sense.

In addition to the service satisfaction scale, qualitative investigation was carried out using

open ended questions. As with the service satisfaction scale there was a similarity in the

responses from both groups with most of those who responded making a positive comment.

About half of the respondents also added a negative comment, most of which tended to

highlight logistical issues such as parking, waiting times, lack of continuity with doctors,

and a lack of discussion time. Comments included references to uncertainty, a need for

information and support, and gratitude for a perceived high quality of care. There was one

major difference between the control and intervention patients however, with 45% making

enthusiastic comments about the support worker and/or the information they provided.

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11.3.3 Chapter 10

While pursuing the two aforementioned primary aims of this thesis, the data collected

revealed some unexpected results for the LAEP. Therefore, because the unique cohort

under examination provided the opportunity to further examine the operation of the LAEP

itself this became an additional, albeit secondary, aim of the thesis. Outcomes over three

months for seizure patients, some of whom were taking AEDs and some of whom were not,

were compared (Panelli et al., 2007).

Cross sectional symptom by symptom measurement with LAEP at baseline and three

months showed a similar pattern of symptom reporting regardless of subgroup (Group A

started AEDS in the First Seizure Clinic; Groups B started AEDs prior to the First Seizure

Clinic; Groups C took no AEDs). However, by comparing the symptom by symptom

assessment at baseline and three months to assess longitudinal change, some alterations

in individual symptom reports become apparent. Between the groups there was a slight

increase in symptom reporting for the AED user group compared to the non-AED group.

However, differences between the groups cannot necessarily be assumed to reflect AED

effects alone, since the possible effects of epilepsy itself, reactions to the diagnosis and

reactions to the fact of treatment all need to be considered.

When summed and used as a global measure the LAEP scores were only weakly

differentiating of those on AEDs and those who were not taking these medications,

whereas in contrast, there was large correlation between the global LAEP and the two

HADS subscales, particularly anxiety. Anxiety scores were the major predictor of the global

LAEP at both baseline and three months. These results imply that the use of LAEP as a

global score is unlikely to provide informative results as to the overall adverse effects of

AEDs. Rather, LAEP scores are likely to indicate levels of anxiety and depression. Symptom

by symptom measurement with LAEP does offer a more textured summary as to the range

of effects and if taken at baseline and applied as a repeated measure, changes in symptom

reporting over time for can be identified. Consideration needs to be given however, to the

fact that these results while indicating a relationship between certain symptoms and AED

use, cannot necessarily be assumed to be indicative of AED adverse effects. They reflect an

association with AED treatment as well as with epilepsy and its related effects.

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11.4 Strengths of the study

11.4.1 Overview

The First Seizure Clinic study addressed the psychosocial characteristics of patients with

new-onset seizures, an understudied group in the literature (Velissaris, 2007). In addition,

the project took advantage of the First Seizure Clinic setting to enlarge the research

parameters and include all patients referred for a possible new-onset seizure regardless of

diagnosis. By so doing, useful information was also gathered regarding the operation of First

Seizure Clinics and those patients with a non-seizure related diagnosis. Further benefits of

the study included the opportunity to compare the outcomes for newly diagnosed seizure

patients as compared to a non-seizure cohort of equivalent age and gender, who had

undergone a similar emergency admission and assessment process.

The evaluation of psychosocial support programs in epilepsy has received limited attention,

and the choice of an RCT to evaluate such a program makes a useful addition to the small

number of such studies on this topic (Bradley & Lindsay, 2008). Despite the need to adjust

the randomization process towards the end of the study, the application of an RCT in this

setting has demonstrated the potential for the use of the methodology in future studies.

The detailed analysis of LAEP in a seizure cohort which included both patients using AEDs

and those who did not, enabled new insights into the operation of the measure. Future use

of the measure can now focus on applying the scale in the way most likely to maximize the

sensitivity of understanding both drug side effects and the course of symptoms which may

be part of, or a result of, the condition being treated.

11.4.2 Recruitment

Recruitment to the study was successful (7.2.8), with only 13% of those approached refusing

to participate. Of those willing to enrol only 5% met the criteria for exclusion. The reasons

for exclusion had been deliberately kept to a minimum (age less than 16 years, a pre-

existing diagnosis of epilepsy, and the inability to read or complete the questionnaire due to

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cognitive or language related reasons combined with the non-availability of an appropriate

interpreter). Those who refused or were excluded from participation, tended to be just a little

older than the mean age of study sample. While it might be argued that including patients

regardless of factors such as comorbidity would confound the results, nevertheless, more

stringent inclusions would have increased the difficulty of recruitment in a small study with

limited time and resources. In any case the sample represents overall referrals to a First

Seizure Clinic and thereby lends itself to generalization with other similar clinics. There was

no exclusion based on the grounds of provoked seizure. This leans towards recognition of

the concept of an inherent ‘seizure threshold’ (2.4) which suggests that acute symptomatic

seizures are not just a simple, predictable cause and effect event, but rather the result of the

interaction between the provoking factor and the individual brain (Fisher, van Emde Boas

et al., 2005).

11.4.3 Outcome measures

Patients responded well to all questions in the study including those used to assess anxiety

and depression. The measures selected demonstrated satisfactory psychometric properties

within this cohort and the general correlation between the measures of ill-being and well-

being suggested that the chosen measures were functioning appropriately. However, the

stigma question could not be clearly framed in the new-onset seizure setting and this may

have diminished its value (see 11.5). In addition, the presence of a control group revealed

that data from the LAEP global score, was more likely to a reflection of anxiety and

depression than the effects of AEDs. However, as noted above the design of the study

allowed for further analysis to investigate this issue, and thus what could have been a

weakness in the study because an opportunity to demonstrate the strength of the design and

learn more about the function of LAEP.

As the cohort was made up of people very new to the seizure diagnosis and, in some cases,

of people with alternative diagnoses, the selected measures had to be worded in a way which

was acceptable to all participants. It could be argued that this reduces the assessment to a

very generic study rather than focussing on seizure specific issues. However, although most

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of these measures by their content or by their wording may have been operating essentially

as generic measures, they have been frequently utilized in other epilepsy studies (Abetz et

al., 2000; Jacoby et al., 2007), thus allowing for cross-study evaluation, not only with patients

who are newly diagnosed with seizures, but also those with chronic epilepsy and other

conditions. The HADS scale in particular has been very widely used in diverse studies both

as a continuous and categorical variable.

Due to the limited data relating to the psychosocial characteristics of patients with new-

onset seizures, any research data into this area which lends itself to comparison with other

external studies will multiply its value. The First Seizure Clinic study deliberately included

measures which have been utilized in large European seizure studies in order to facilitate

some international comparisons. While recruitment criteria vary slightly between studies

and environmental factors such as time to enrolment can also differ, it is anticipated that

some of the First Seizure Clinic study data will be suitable for ongoing cross-cultural

comparisons. Chapter 9 includes an external comparison of baseline data with that of the

Multicenter Study of Early Epilepsy and Single Seizures (MESS) (Jacoby et al., 2007). Both

cohorts were similar in age distribution with a median age of 36 years or below and both

cohorts included a majority of males. Score distributions for general health and past worry

were similar in both studies. However, the case levels of anxiety, and depression, were a

little higher in the First Seizure Clinic. Future worry and stigma were also higher in the

First Seizure Clinic study. In relation to future worry, given that the time lapse from the

first seizure to data collection in the MESS study was likely to have been longer than in the

current study, and given also that in the current study worry showed that it could fall quickly

in the first three months, this may explain that difference. Further discussions with the

authors of the MESS study may provide additional insights into the overall results.

11.5 Limitations of the study

While recruitment to the study was excellent, losses over the period of the study were

relatively high, despite persistent efforts to retain contact with all participants over the 12

month period (7.2.9.1). Retention at 3 months was 64% of baseline, and at 12 months it

was 44% of baseline. Of the total losses only 15% were formal withdrawals, with most of

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the losses being mail returned to sender, or failure to respond. A number of factors may be

responsible. The youthful age of the cohort (36.5 ± 15.9 years) meant that participants were

more likely to be mobile in terms of their residential status. Over a period of 12 months

it is to be expected that a number could have relocated, without providing a forwarding

address. The additional losses may simply reflect a lack of interest in the project or lack of

commitment to participation, while others might indicate actual resistance to continued

participation in the study. In such cases it is possible that once having been treated by the

clinic for a suspected seizure, whether or not the diagnosis was ultimately seizure-related,

many participants preferred to have no further contact. One sad and important aspect of the

losses was the confirmed death of two participants out of a total of 167 with seizure-related

diagnoses (8.3.2). The distribution of gender and diagnostic categories for withdrawals and

losses combined, resembled the overall cohort. However, in age, the withdrawals and losses

tended to be little younger than the overall cohort. Nevertheless, fortunately the overall

balance of age, gender, diagnostic categories and study groups remained similar throughout

the study.

The selection of appropriate longitudinal measures for this unique cohort presented many

challenges as discussed earlier (7.11.1). The delay in the development of the clinical database

meant that anticipated input from this source was unavailable. In addition when selecting

psychosocial measures, the nature of the cohort presented unique difficulties and there were

few models from which to draw examples. The cohort comprised a diverse collection of

participants with a possible first seizure, all of whom passed through the diagnostic process

and not all of whom were ultimately diagnosed with seizures or epilepsy. Epilepsy specific

questions were not appropriate in the First Seizure Clinic setting, hence the need to utilize

more generic measures such as the HADS. The First Seizure Clinic setting made it difficult

to contextualize questions such as the stigma question for example. Therefore, the results

which show alignment between stigma, anxiety and depression in all diagnostic groups

beg the question of whether stigma scores are telling us something about stigma or simply

reflecting anxiety and depression states. However the style of questioning that was used

mirrored the form utilized by the Liverpool group that has been involved in large studies

of new-onset seizure patients. It has been the style of these researchers to adopt a mix and

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match method of questionnaire development, bringing together a collection of measures

rather than one global instrument. This includes the use of single items that are considered

to be independently valid. What limitations there may be in the selected measures will

hopefully be balanced by the fact that the results of the current study can be compared to

large international studies. This in turn will assist in the refinement of measures for further

studies.

The First Seizure Clinic study tested the effect of support using workers with a unique

combination of experience and training, not previously evaluated for epilepsy in the

literature. Due to their own epilepsy the workers were defined as peers, and yet they were

trained extensively by EFV and worked within the organizational framework. Initially

they worked as volunteers but later they became members of the paid staff, where their

peer experience was welcomed as an asset. It may be argued that the role is a unique

creation which makes it is difficult to compare with other peer support studies, or psycho-

educational interventions which are provided by health professionals. That may be true, but

this particular role has been developed deliberately, and has certain positive characteristics.

While trained to the same high level of epilepsy knowledge as other health professionals

within the EFV, in line with the agency’s philosophy the workers were permitted, and in fact

encouraged, to include references to their own epilepsy when working with clients. Once

the workers had disclosed their epilepsy to the patients it was up to the patients whether

this line of discussion was pursued. All patients knew that the worker had epilepsy and

for some this may have helped to build an empathetic and positive connection (5.4.3.1). In

others it may have been of no particular consequence. The role of is the worker is described

in the method section (7.3.3) and could be reproduced as either a paid or voluntary position,

provided sufficient training and mentoring was provided.

It was disappointing that the RCT protocol for randomization which was initially established

using computer generated allocation to groups could not be sustained through the last

months due to a shortage of support staff (7.3.1). Nevertheless this adjustment of the RCT

protocol to a pseudo randomized allocation by alternate allocation to groups, while not

desirable, was considered the best option under the circumstances to retain the integrity of

the intervention throughout the study.

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11.6 Implications of the study results

The data collected by the First Seizure Clinic study underline the value of specialist

assessment for people suspected of experiencing new-onset seizures. Of the individuals

with a suspected first seizure referred to the two participating clinics, approximately 30%

ultimately received a non-seizure diagnosis. This figure is line with other studies of First

Seizure Clinics (11.3.1) and brings to mind the literature on the misdiagnosis of seizures,

wherein the suggested rate of seizure misdiagnosis in the community can be as high as 25%

(2.7.1). As First Seizure Clinics operate with fast track referrals and specialist assessment,

they have the potential to effectively identify non-seizure patients, reduce misdiagnosis,

and instigate appropriate treatment, as was demonstrated in this study. Benefits can also

accrue to patients found to have a non-seizure diagnosis, as they can be quickly freed of any

unnecessary seizure-related restrictions to lifestyle, they can avoid unnecessary medication,

and they can be promptly redirected to appropriate alternative care.

The outcomes for the overall First Seizure Clinic cohort were marked by their relatively

consistent results over 12 months, with very little change over time in any scores apart from

past worry, future worry and LAEP. In addition there was little apparent variation between

the diagnostic categories. Where worry fell significantly, it fell in all categories, and most

markedly in the first three months. It would appear that in the first year following a referral

for a possible seizure, most patients have reacted in a similar way regardless of diagnosis.

This raises two issues. Firstly, it suggests that patients experiencing new-onset seizures or

epilepsy may not vary greatly in their psychosocial well-being compared to any other patient

experiencing a similar health condition. Secondly it underlines the importance of including a

realistic control group in any study of seizure patients to prevent the adoption of inaccurate

conclusions. For example, in the current study the levels of worry identified and the

significant reduction in worry which occurred over three months could have been explained

as a seizure-related phenomenon, whereas the inclusion of the non-seizure patients indicated

that it was not specifically related to the experience of a seizure.

The inclusion of a non-seizure comparison group provided an opportunity to test the

reliability of measures which have been commonly adopted in seizure research. As a result,

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some anomalies became apparent. In particular, the global LAEP proved unable to clearly

discriminate between patients taking AEDS and those who were not. Testing the LAEP

with a control group in the current study highlighted the difficulty of teasing out side effects

of drugs from unrelated symptomatology, psychosocial, concomitants of the disease under

scrutiny and the psychosocial outcomes of the diagnosis. Further examination indicated that

symptom by symptom assessment provides more relevant useful information than a global

score and that baseline measures, with repeated assessment, are essential when using the

scale. The strong interrelationships of LAEP with anxiety and depression, as measured by

the HADS, suggests that where LAEP is to be applied the associated use of HADS would

provide important additional information to assist in the interpretation of LAEP results.

The difficulties of utilizing LAEP suggest that further investigation and development of

scales to assess the adverse effects of AEDS is warranted.

The First Seizure Clinic study identified levels of anxiety and depression above community

norms for all the diagnostic categories. At baseline this was especially evident in the ‘other’

group, which included a number of patients with symptoms that were poorly explained by

identifiable organic causes, and also patients diagnosed as having had psychogenic events.

Presentations with psychogenic seizures and medically unexplained symptoms may include

patients in whom the symptoms are an expression of distress (sometimes referred to as

somatization). Research has frequently shown that such patients often have increased rates

of anxiety and depression (Henningsen et al., 2003; Herrman & Chopra, 2009). Therefore,

if the anxiety and depression scores for new patients were routinely made available to the

treating physicians this may be of assistance when assessing seizure-like symptoms with

no apparent cause. Indeed, with anxiety and depression rates elevated in all diagnostic

categories, a baseline HADS score could be helpful in assessing the ongoing relationship

between symptoms, diagnosis, anxiety and depression in all patients referred for the

investigation of a possible first seizure.

Anxiety and depression case rates remained consistent within the First Seizure Clinic

cohort over 12 months, regardless of diagnosis. This suggests that none of the medical or

support services provided were sufficient to ensure that levels of anxiety and depressions

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fell to within the usual community range. Given the fact that reduced QOL is known to be

associated with depression and that depression tends to compound other issues of ill-health,

seizure- related or not (Barry et al., 2008; Cramer. Blum, Reed, Fanning, & Epilepsy Impact

Group, 2003; Herrman & Chopra, 2009; Moussavi et al., 2007), the question arises of how

these conditions should be managed and whether there is a case for increased medical

management of anxiety and depression, either within the First Seizure Clinic or through

referrals. Apart from an epileptologist, does a First Seizure Clinic need ready access to a

psychologist and/or psychiatrist? Does the First Seizure Clinic need to be more closely in

contact with the GPs of patients who are identified with psychological distress, to ensure

follow up care is available? Research suggests that the First Seizure Clinic is not unique in

this matter, with the problem occurring at all levels of health care including secondary care

(Reid et al., 2001).

The RCT which evaluated a patient support service for patients with a seizure-related

diagnosis generated results that demonstrate some ambiguity. On the one hand, quantitative

analysis of the key variables showed little difference between the RCT groups regardless of

the intervention. In other words, the study did not demonstrate any effect of the support

service on health perception, GQoL, worry, anxiety, depression, or perceived stigma levels.

However, on the other hand, the questions about health information seeking revealed that

the intervention was highly valued by patients, who found the support worker very helpful.

This is similar to the findings of Helde et al. (2005) who published one of the rare RCT

studies into seizure patient support programs. The study assessed the effect of a nurse

provided program, and failed to demonstrate a significant difference between the RCT

groups for improvements in QOL. However, the study found that the patient satisfaction

with the program was very significant. These results raise questions as to exactly what

such programs need to achieve to be considered beneficial. It is possible that the support

program reduced the amount of time and/or number of visits that patients required from

their specialist or GP. It may have improved adherence to treatment and reduced hospital

readmission. Carers may have benefited from the information provided. However, a broader

range of assessment tools in subsequent research is required to provide more insights into

these matters.

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While the RCT failed to show any improvements in the selected key variables due to the

intervention, it is critical to also note that the RCT did not record any deterioration due

to the intervention. This is a subtle point, but relevant, because if it is agreed that there

is sufficient evidence of positive patient response to continue with such work, it has been

demonstrated that well trained peer support workers, paid or unpaid, can do the job

safely and be well accepted by patients. While acknowledging the positive benefit of peer

support, Helde et al. (2005) suggested that ‘…a strong platform of factual knowledge about

the disease should be provided by health professionals’ (p. 457). No evidence was offered

for this statement and the current study suggests that this role can be carried out quite

successfully by peer workers if they are appropriately trained. There can be resistance to

the use of peer support workers amongst health professionals, especially those who have

not experienced a quality program first hand. Therefore, the evidence that no detriment is

caused by this program is a point of some significance.

It is also important to mention that by providing a service within a First Seizure Clinic, the

EFV is working in an environment where the diagnosis for an individual can be uncertain

for some time while investigation is carried out. Their presence in the clinic means that

EFV workers will be providing support to all comers about what constitutes a seizure,

how a seizure diagnosis is confirmed, and possible differential diagnoses. Many clients will

ultimately be given a non-seizure diagnosis and the support workers understand the need to

provide a sensitive, balanced information service to patients on the basis that investigation is

ongoing. The current study did not assess the benefit of the support program to non-seizure

patients because the service was designed primarily for seizure patients and the randomized

controlled trial focussed on this group only. Nevertheless, if the EFV continues to work

in the First Seizure Clinic, it may be pragmatic to acknowledge the diversity of clients

attending the clinic and to realize the potential which exists to provide a useful service to

all clinic attendees, purposefully rather than by default. This approach would require some

additional research, along with redefinition of the program framework, additional resource

material, and further staff training.

On the matter of health information seeking it is interesting to note that the First Seizure

Clinic cohort as a whole confirmed the theories of Harris and Dewdney (1994) (5.4.5) who

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suggest that the preference for information is directed at sources which are most accessible,

and preferably accompanied by emotional support. The intervention group had easy access

to the EFV support worker and these patients used the service enthusiastically whereas, by

contrast, the control group did not of their own volition seek out much assistance from the

EFV. This is particularly important in relation to the First Seizure Clinic cohort considering

that two thirds of the cohort were male and, that research suggests they may be less likely

than women to seek help for health related issues (Galdas et al., 2005).

11.7 Recommendations

Patients who experience a possible first seizure should be referred to an epilepsy specialist

physician for investigation and confirmation of the diagnosis. Such a clinical pathway is

likely to reduce misdiagnosis of seizures and also to minimize inappropriate treatment for

patients both with, and without, a seizure diagnosis. If seizure recurrence was reduced,

injury, comorbidity and psychosocial sequelae may also be reduced.

Anxiety and depression should be measured at baseline in all patients presenting with

a possible first seizure. Where seizure is not the diagnosis, establishing clinical levels of

anxiety or depression may be of assistance in making an alternative diagnosis. In all cases,

regardless of diagnosis, baseline measurements will provide a framework for evidence-based

assessment and ongoing management of primary or comorbid psychiatric conditions.

Where anxiety and depression are identified, appropriate treatment and/or referrals

should be ensured. This may require the provision of additional resources within the First

Seizure Clinic such as a psychologist or psychiatrist. At the least it requires well developed

collaboration with GPs to ensure ongoing management of such patients with, and without

seizures.

Where LAEP is likely to be used for the assessment of the adverse effects of AEDs in

seizure patients, the use of a global score is not recommended; rather it is suggested that it

be applied as a symptom-by-symptom, longitudinal measure with early baseline assessment,

whether or not the patient is taking medication at that early stage. The use of LAEP should

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include the parallel use of anxiety and depression measures such as available through the

HADS.

The First Seizure Clinic patient support program established by the EFV to assist seizure

patients, has demonstrated strong patient approval and no adverse effects on well-being

outcomes. In the absence of alternative proven methods of patient support, and in a

community where health service policy promotes the provision of information and support

to patients, its continuation is recommended. The demographic data from this study

suggest that the EFV should review the First Seizure Clinic program to ensure it is suitably

resourced for a client base which is youthful and includes a high proportion of males. In

addition the program could be slightly redefined to offer a service to all First Seizure Clinic

patients, rather than only those categorized with a seizure diagnosis.

When assessing the provision of its general services, the EFV could consider the

information seeking behaviour demonstrated by new-onset seizure patients, who exhibit a

preference for the information sources that are most accessible. In light of this observation,

consideration could be given to whether existing EFV services are structured to maximize

access for clients. Also, considering the particularly strong emphasis patients placed on their

GP as a source of information, the EFV might investigate how GPs currently rate their

readiness to manage seizure patients and whether there are avenues for the EFV to promote

relevant education and support of GPs.

11.8 Future Directions

Continuing research into the psychosocial characteristics of patients with new-onset seizures

is required, integrated with clinical databases and, extending to larger cohorts in order to

allow more specific investigation of variations between subgroups. For example, a link to

the clinical data in the current study would have enabled the inclusion of precise information

regarding seizure recurrence, patient medication regimes, epilepsy syndromes, comorbidity,

and their relationship to key psychosocial outcomes studied. One positive aspect of the

current research which would benefit future First Seizure Clinic studies is the inclusion of

non-seizure patients into the overall cohort where possible. This ensures that results are

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tested for their specific relationship to seizures. An additional benefit is the development of

enhanced understanding of the characteristics and management requirements of the non-

seizure patients.

Anxiety and depression were features of this cohort, regardless of diagnosis. Current

literature notes the negative influence of poor mental health, especially depression, on

chronic health conditions, which raises the question of what can be done in the First

Seizure Clinic setting to minimize the negative effects of these conditions. Strategies for

identification and treatment of anxiety and depression within and beyond a First Seizure

Clinic could be developed, bearing in mind that patients are not always receptive to such

a diagnosis (Herrman & Chopra, 2009). This will require further research but also the

allocation of resources to the refinement and practical application of what is already known

(Kroenke, 2003). Successful models of management would have relevance to secondary care

generally, not just First Seizure Clinics.

While the EFV support program offers a positive addition to the First Seizure Clinic,

ongoing evaluation is required to better understand how benefits to patients can be

maximized. Varied methods of assessment need to be selected which can best identify the

strengths and weaknesses of the program. Although the patient perspective is paramount,

it may be that including a broader range of perspectives in formal evaluation, such as those

of the support workers, physicians, carers, and other relevant stakeholders will help to

clarify the program effects. Outcome measures could be extended to include assessment of

treatment adherence, and qualitative responses to questions concerning support services. In

regard to anxiety and depression, research is required into how such a support service can

best align with, and participate in, any clinic initiative to reduce the rates of both conditions.

The effects of widening the support to non-seizure patients also require investigation.

The patient support model established by the EFV has demonstrated that well-trained peer

workers can be safely utilized to provide a service with positive benefits to seizure patients.

This model may be of particular value to resource poor communities. The publication of

a guide to the program principles, structure and training philosophies, may facilitate the

uptake of such a service nationally and internationally.

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The management of seizures is largely dependent on the use of AEDs, so the monitoring of

adverse effects due to such medication warrants further investigation and development of

assessment scales.

In conclusion, the current study prospectively followed a cohort of patients for 12 months

from the point of referral to a First Seizure Clinic. The clinic worked effectively to minimize

the misdiagnosis of seizures and epilepsy, identifying approximately 30% of the cohort as

non-seizure patients. The psychosocial outcomes for all patients regardless of diagnosis were

very stable, with little change over 12 months. The most significant change was a decrease in

past worry and future worry, especially in the first three months. Also notable was the rate

of anxiety and depression cases which was up to twice that of the general population.

This project demonstrated that in the first 12 months following a diagnosis, patients with

a seizure/epilepsy diagnosis were similar in their psychosocial responses to non-seizure

patients in a First Seizure Clinic. The lack of any additional condition-specific burden of

ill-being in the seizure patients, such as perceived stigma or reduced GQoL, over and above

those which were common to the First Seizure Clinic cohort, suggests that rapid referral,

specialist assessment, and minimization of seizures through appropriate treatment limited

the negative outcomes for new-onset seizure/epilepsy patients. This would agree with other

published data (2.6; 3.3). Certainly, anxiety and depression rates were elevated, but this was

not shown to be seizure-specific. Having identified elevated anxiety and depression as a

common issue for all First Seizure Clinic patients, and given the well documented negative

effect of these conditions on well-being in all patients, seizure and otherwise, this issue

needs further investigation and action.

For the patients with a seizure-related diagnosis, the provision of an additional support

service provided by the EFV did not alter the key outcomes in the intervention group

which received the service. Nevertheless, the patient response to the support worker was

extremely positive with the worker reported as the most used source of information for

the intervention group, and almost always helpful. It is possible that the broad effect of the

support service has not been fully captured by the outcomes measures of the current study.

While patient responses suggest the service was well received, the program may benefit from

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a review of data collated in this thesis and broader evaluation. A key point is the need to

ensure the service is well oriented to the needs of young adult, male clients. In addition the

EFV may benefit by considering the patient information seeking behaviour described, and

whether this behaviour has ramifications for other EFV service delivery.

As a lower prevalence condition, although medical research and the application of new

treatments are flourishing, the broad picture of epilepsy as a community health issue has

received little attention from government health funding and policy bodies worldwide,

including Australia. Much needs to be done in the area of public health research, the

evolution of policy, and the development of patient support resources. It has been suggested

that for lower prevalence conditions such as epilepsy, the best hope for progress in these

areas is the collaboration of stakeholders, and especially the leadership and participation

of community based agencies (CDC, 2003). Some international examples of success have

emerged (Hanna et al., 2002), and in Australia the First Seizure Clinics which participated in

this project provide one positive Australian example of what can be achieved. Two discreet

organizations joined forces bringing together medical services and patient support services

with a consumer perspective. Each service has unique expertise and resources, but working

together enhances the efforts of both, with the potential for positive benefits to patients.

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APPENDICES

PLEASE NOTE

Appendix A is unable to be reproduced online. Please consult print copy held in the Swinburne Library.

237


APPENDIX B – ETHICS CERTIFICATES & ENDORSEMENTS

Appendix B1

238


Appendix B2

239


Appendix B3

240


Appendix B4

241


Appendix B5

242


APPENDIX C – INFORMATION MATERIAL & CONSENT FORMS THE ALFRED

Appendix C1

243


Appendix C2

244


245


Appendix C3

246


Appendix C4

247


Appendix C5

248


Appendix C6

249


Appendix C7

250


Appendix D1

APPENDIX D – INFORMATION MATERIAL & CONSENT FORMS THE ROYAL MELBOURNE HOSPITAL

251


Appendix D2

252


253


Appendix D3

254


Appendix D4

255


Appendix D5

256


Appendix D6

257


Appendix D7

258


APPENDIX E – SCALES AND ITEMS

Appendix E1 – Baseline

FIRST SEIZURE CLINIC STUDY

Thank you for taking time to answer these questions.

Patients are usually referred to the first seizure clinic after an unexplained health

‘event’ which needs assessment. We know that not everybody who attends the

clinic has had a seizure and we are interested in the experience of all the patients

whatever their diagnosis. The words seizures or blackouts are used throughout this

questionnaire only for simplicity.

If you are unsure how to reply to a particular question, please give the best answer

you can and feel free to write in any other comments you have, If you change your

mind about any answer you have given, feel free to cross it out and write your

initials in the margin. You can then mark the answer you prefer.

Your name and address do not appear anywhere in this booklet. The information

you give us is linked to your medical records and will not be used in any way that

could identify you personally.

Your contribution to this study is greatly appreciated.

259


Demographics Are you male or female? (please circle) How old are you? __________________ Who do you live with? Please tick all that apply. a) parent or parents e) adult child or children b) friend or friends f) dependent child or children c) alone g) other__________________ d) husband, wife or partner What is the highest level of education you have completed? a) primary school b) some secondary school c) secondary school d) diploma/TAFE/Trade qualification e) degree f) other Which of these categories best describes your employment? a) full-time employed b) part-time employed c) not employed d) full-time home duties e) retired f) student

General Health In general, would you say your overall health is: Excellent ............................ 1 Very good........................... 2 Good.................................. 3 Fair .................................... 4 Poor ................................... 5

Global Quality of Life So taking everything together, which of the faces below shows best how you feel about your life as a whole? Please circle the number under the face which shows best how you feel.

260


Hospital Anxiety and Depression Scale [HADS] a) I feel tense or ‘wound up’ h) I feel as if I’m slowed down: Most of the time ........................................1 Nearly all the time..................................... 1 A lot of the time.........................................2 Very often ................................................ 2 From time to time, occasionally .................3 Sometimes .............................................. 3 Not at all ...................................................4 Not at all................................................... 4 b) I still enjoy the things I used to enjoy: i) I get a sort of frightened feeling like Definitely as much.....................................1 butterflies in the stomach: Not quite so much ....................................2 Not at all................................................... 1 Only a little ...............................................3 Occasionally .......................….......... ........ 2 Hardly at all...............................................4 Quite often...................……....................... 3 Very ften.........................…........................ 4 c) I get a sort of frightened feeling as if something awful is going to happen: j) I have lost interest in my appearance: Very definitely and quite badly 1 Definitely. ................................................. 1 Yes, but not too badly ...............................2 I don’t take as much care as I should........ 2 A little, but it doesn’t worry me...................3 I take just as much care............................ 3 Not at all ...................................................4 I take more care than I have previously..... 4 d) I can laugh and see the funny side of things: k) I feel restless, as if I have to be on the move: As much as I ever did................................1 Very much indeed .................................... 1 Not quite so much now................. .............2 Quite a lot ................................................ 2 Definitely not so much now........................3 Not very much.......................................... 3 Not at all ...................................................4 Not at all................................................... 4 e) Worrying thoughts go through my mind: l) I look forward with enjoyment to things: A great deal of the time .............................1 As much as I ever did............................... 1 A lot of the time.........................................2 Rather less than I used to......................... 2 From time to time, but not too often ...........3 Hardly at all .............................................. 3 Not at all ...................................................4 Only occasionally ..................................... 4 f) I feel cheerful: m) I get sudden feelings of panic: Not at all ...................................................1 Very often indeed ..................................... 1 Not often. ..................................................2 Quite often ............................................... 2 Sometimes................................................3 Not very often........................................... 3 Most of the time ........................................4 Not at all................................................... 4 g) I can sit at ease and feel relaxed: n) I can enjoy a good book or radio or TV Definitely...................................................1 programme: Usually......................................................2 Often........................................................ 1 Not often...................................................3 Sometimes ............................................... 2 Not at all ...................................................4 Not Often.................................…............... 3 Very seldom............……….......... ............. 4 * The wording of the HADS questionnaire varies slightly from the original (See chapter 5.12.8). Item j was felt to give undue weighting to depression and was recoded.

261


Perceived Stigma Scale And now thinking about how you feel with and towards other people, for each statement, please circle the number next to the answer that best describes how you feel. Because of my condition: Not Yes, Yes, Yes, at all maybe probably definitely a) I feel some people are. uncomfortable with me 1 2 3 4 b) I feel some people treat me. like an inferior person 1 2 3 4 c) I feel some people would prefer to avoid me. 1 2 3 4

Liverpool Adverse Events Profile [LAEP] During the last four weeks, have you had any of the problems listed below? For each item, if it has always been a problem, circle 4, if it has sometimes a problem, circle 3, and so on. Please be sure to answer every item. Always a Sometimes Rarely a Never a problem a problem problem problem Unsteadiness 4 3 2 1 Tiredness 4 3 2 1 Restlessness 4 3 2 1 Feelings of aggression 4 3 2 1 Nervousness and/or agitation 4 3 2 1 Headache 4 3 2 1 Hair loss 4 3 2 1 Problems with skin rash 4 3 2 1 Problems with acne 4 3 2 1 Double or blurred vision 4 3 2 1 Nausea 4 3 2 1 Diarrhoea 4 3 2 1 Constipation 4 3 2 1 Difficulty in concentrating 4 3 2 1 Trouble with mouth or gums 4 3 2 1 Shaky hands 4 3 2 1 Weight gain 4 3 2 1 Dizziness 4 3 2 1 Sleepiness 4 3 2 1 Depression 4 3 2 1 Memory problems 4 3 2 1 Disturbed sleep 4 3 2 1 Weight loss 4 3 2 1 *This scale expanded to 23 items for data collection and collapsed to 19 items for analysis (5.12.8)

262


Appendix E2 – 3 months

General Health

In general, would you say your overall health is: Excellent ............................ 1 Very good........................... 2 Good.................................. 3 Fair .................................... 4 Poor ................................... 5

Global Quality of Life

So taking everything together, which of the faces below shows best how you feel about your life as a whole? Please circle the number under the face which shows best how you feel.

Worry about Seizures / Blackouts How worried are you about the seizures/ How worried are you that you might have blackouts you have had and about your conditions another seizure / blackout? generally (including seizures / blackouts, and/or any associated injuries and/or treatment side effects?? Very worried...................................................1 Very worried .................................................... 1 Fairly worried..................................................2 Fairly worried.................................................... 2 A little worried.................................................3 A little worried................................................... 3 Not worried at all ............................................4 Not worried at all............................................... 4

263



264




265


Sources of Health Information

Please tick the boxes which show your sources of information and also circle number 1, 2 or 3 to show if the information was helpful My information about seizures / blackouts comes from: If you

tick a box, also

circle a number

Very Helpful

Helpful

Not Helpful

Family and friends 1 2 3

Someone I know with a similar health condition 1 2 3

General Practitioner 1 2 3

Internet 1 2 3

EEG Staff 1 2 3

Pharmacist 1 2 3

Library 1 2 3

Health professionals such as a nurse, psychologist or chiropractor (please indicate……………………………..) 1 2 3

Other practitioners such as a naturopath or aromatherapist (please indicate…………………………….)

1 2 3

Epilepsy Foundation worker at the first seizure clinic 1 2 3

Epilepsy Foundation of Victoria (if information was all provided by the Foundation’s clinic workers, do not mark this row)

1 2 3

Telephone information service (which service?...................................................)

1 2 3

Other (please list)

1 2 3

Patient assessment of the First Seizure Clinic – quantitative evaluation

□□□□□□□□□□

□□□

266


Patient assessment of the First Seizure Clinic – quantitative evaluation Can you lease tell us how you feel about your experience as a patient in the First Seizure Clinic?

Strongly

Agree Agree Disagree

Strongly Disagree

a) I have asked all the questions about my seizures / blackouts, medical tests and treatment which I wanted to ask.

1 2 3 4

b) I have received all the information about my medical condition that I wanted to know. 1 2 3 4

c) I am satisfied with my understanding of the diagnosis. 1 2 3 4

d) I have joined in the decision making about my health care. 1 2 3 4

e) I feel that my individual needs have been considered in the clinic. 1 2 3 4

f) I have received the personal support I needed from the clinic. 1 2 3 4

g) I understand the plan of action, which has been recommended for my health care. 1 2 3 4

h) I feel confident about the health care plan I have in place following my visits to the first seizure clinic.

1 2 3 4

Patient assessment of the First Seizure Clinic – qualitative evaluation What were the most helpful features of the first seizure clinic? ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________

What were the least helpful features of the clinic? ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________

Are there any other comments or suggestion you would like to make about the first seizure clinic? ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________

267


Appendix E3 – 12 months General Health

In general, would you say your overall health is: Excellent ............................ 1 Very good........................... 2 Good.................................. 3 Fair .................................... 4 Poor ................................... 5

Global Quality of Life

So taking everything together, which of the faces below shows best how you feel about your life as a whole? Please circle the number under the face which shows best how you feel.

Worry about Seizures / Blackouts How worried are you about the seizures/ How worried are you that you might have blackouts you have had and about your conditions another seizure / blackout? generally (including seizures / blackouts, and/or any associated injuries and/or treatment side effects?? Very worried...................................................1 Very worried .................................................... 1 Fairly worried..................................................2 Fairly worried.................................................... 2 A little worried.................................................3 A little worried................................................... 3 Not worried at all ............................................4 Not worried at all............................................... 4

268



269




270


Sources of Health Information

Please tick the boxes which show your sources of information and also circle number 1, 2 or 3 to show if the information was helpful My information about seizures / blackouts comes from: If you

tick a box, also

circle a number

Very Helpful

Helpful

Not Helpful

Family and friends 1 2 3

Someone I know with a similar health condition 1 2 3

General Practitioner 1 2 3

Internet 1 2 3

EEG Staff 1 2 3

Pharmacist 1 2 3

Library 1 2 3

Health professionals such as a nurse, psychologist or chiropractor (please indicate……………………………..) 1 2 3

Other practitioners such as a naturopath or aromatherapist (please indicate…………………………….)

1 2 3

Epilepsy Foundation worker at the first seizure clinic 1 2 3

Epilepsy Foundation of Victoria (if information was all provided by the Foundation’s clinic workers, do not mark this row)

1 2 3

Telephone information service (which service?...................................................)

1 2 3

Other (please list)

1 2 3

Patient assessment of the First Seizure Clinic – quantitative evaluation

□□□□□□□□□□

□□□

271


Patient assessment of the First Seizure Clinic – quantitative evaluation Can you lease tell us how you feel about your experience as a patient in the First Seizure Clinic?

Strongly

Agree Agree Disagree

Strongly Disagree

a) I have asked all the questions about my seizures / blackouts, medical tests and treatment which I wanted to ask.

1 2 3 4

b) I have received all the information about my medical condition that I wanted to know. 1 2 3 4

c) I am satisfied with my understanding of the diagnosis. 1 2 3 4

d) I have joined in the decision making about my health care. 1 2 3 4

e) I feel that my individual needs have been considered in the clinic. 1 2 3 4

f) I have received the personal support I needed from the clinic. 1 2 3 4

g) I understand the plan of action, which has been recommended for my health care. 1 2 3 4

h) I feel confident about the health care plan I have in place following my visits to the first seizure clinic.

1 2 3 4

Patient assessment of the First Seizure Clinic – qualitative evaluation Are there any other comments you would like to make about the health care, related to seizures or blackouts, that you have received in the last 12 months? ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________

272


APPENDIX F – CLINIC CHECKLIST

273


APPENDIX G – PATIENT RESOURCE LIST

274


APPENDIX H – FSC Anxiety & Depression

Table H1. FSC Anxiety – case distribution for diagnostic groups in repeated measures sample

Diagnostic categories

Epilepsy Seizure Syncope Other CohortN % N % N % N % N %

Baseline Non-case 23 67.6 20 69.0 9 60.0 11 61.1 63 65.6

Borderline 5 14.7 4 13.8 2 13.3 3 16.7 14 14.6

Case 6 17.7 5 17.2 4 26.7 4 22.2 19 19.8

Total 34 29 15 18 96

3-months Non-case 19 55.9 20 69.0 9 60.0 10 55.6 58 60.4

Borderline 6 17.6 2 6.9 2 13.3 4 22.2 14 14.6

Case 9 26.5 7 24.1 4 26.7 4 22.2 24 25.0

Total 34 29 15 18 96

12-months Non-case 22 64.7 20 69.0 8 53.3 12 66.6 62 64.6

Borderline 5 14.7 2 6.9 5 33.3 3 16.7 15 15.6

Case 7 20.6 7 24.1 2 13.3 3 16.7 19 19.8

Total 34 29 15 18 96FSC, First Seizure Clinic

Table H2. FSC Depression – case distribution for diagnostic groups in repeated measures sample

Diagnostic categories

Epilepsy Seizure Syncope Other CohortN % N % N % N % N %

Baseline Non-case 28 82.4 25 86.2 12 80.0 14 77.7 79 82.3

Borderline 5 14.7 1 3.4 0 0.0 3 16.7 9 9.4

Case 1 2.9 3 10.4 3 20.0 1 5.6 8 8.3

Total 34 29 15 18 96

3-months Non-case 25 73.5 24 82.8 10 66.7 11 61.1 70 72.9

Borderline 7 20.6 4 13.8 2 13.3 4 22.2 17 17.7

Case 2 5.9 1 3.4 3 20.0 3 16.7 9 9.4

Total 34 29 15 18 96

12-months Non-case 25 73.5 24 82.8 12 80.0 14 77.7 75 78.2

Borderline 5 14.7 3 10.3 2 13.3 3 16.7 13 13.5

Case 4 11.8 2 6.9 1 6.7 1 5.6 8 8.3

Total 34 29 15 18 96FSC, First Seizure Clinic

275


APPENDIX I – FSC MEAN SCORES

REPEATED MEASURES SAMPLE T

able

I.

FSC

Diag

nosti

c Cat

egorie

s – m

ean

scores

for k

ey va

riable

s – re

peat

ed m

easu

res sa

mple

Varia

ble

Tim

e Po

ints

Dia

gnos

tic c

ateg

ory

Epi

leps

ySe

izur

eSy

ncop

eO

ther

Tota

lN

Mea

n (S

D)

NM

ean

(SD

)N

Mea

n (S

D)

NM

ean

(SD

)N

Mea

n (S

D)

Gen

eral

hea

lthBa

selin

e34

3.65

(0.

85)

293.

66 (

0.97

)15

3.47

(0.

99)

183.

61 (

0.98

)96

3.61

(0.

92)

3-m

onth

s34

3.47

(0.

86)

293.

48 (

0.79

)15

3.60

(1.

06)

183.

39 (

0.78

)96

3.48

(0.

85)

12-m

onth

s34

3.44

(0.

89)

293.

79 (

0.77

)15

3.80

(0.

78)

183.

44 (

0.78

)96

3.60

(0.

83)

GQ

oLBa

selin

e24

5.29

(1.

08)

285.

18 (

1.22

)9

5.22

(1.

86)

124.

92 (

1.31

)73

5.18

(1.

26)

3-m

onth

s24

5.00

(1.

44)

285.

14 (

1.53

)9

5.44

(1.

59)

124.

50 (

1.38

)73

5.03

(1.

48)

12-m

onth

s24

5.08

(1.

32)

285.

32 (

1.36

)9

5.56

(1.

33)

124.

58 (

0.90

)73

5.15

(1.

29)

Past

wor

ryBa

selin

e34

2.71

(0.

91)

282.

50 (

0.92

)15

2.40

(1.

06)

182.

50 (

0.99

)95

2.56

(0.

95)

3-m

onth

s34

2.18

(1.

01)

281.

93 (

0.98

)15

1.60

(0.

63)

181.

61 (

0.85

)95

1.91

(0.

95)

12-m

onth

s34

2.06

(0.

92)

281.

71 (

0.85

)15

1.40

(0.

83)

181.

78 (

0.94

)95

1.80

(0.

91)

Futu

re w

orry

Base

line

352.

77 (

0.94

)29

2.52

(1.

06)

152.

47 (

1.13

)18

2.44

(0.

86)

972.

59 (

0.99

)

3-m

onth

s35

2.37

(1.

03)

292.

03 (

0.91

)15

1.67

(0.

90)

181.

72 (

0.83

)97

2.04

(0.

97)

12-m

onth

s35

2.06

(0.

83)

291.

97 (

1.09

)15

1.60

(0.

91)

181.

78 (

0.81

)97

1.91

(0.

93)

FSC,

Firs

t Sei

zure

Clin

ic; G

QoL

, Glo

bal Q

ualit

y of

Life

; HA

DS,

Hos

pita

l Anx

iety

Anx

iety

and

Dep

ress

ion

Scal

e; L

AE

P, L

iver

pool

Adv

erse

Eve

nts P

rofil

e

276


Tab

le I

. FS

C D

iagno

stic C

atego

ries –

mea

n sco

res fo

r key

varia

bles –

repe

ated

mea

sures

samp

le con

t.

Varia

ble

Tim

e Po

ints

Dia

gnos

tic c

ateg

ory

Epi

leps

ySe

izur

eSy

ncop

eO

ther

Tota

lN

Mea

n (S

D)

NM

ean

(SD

)N

Mea

n (S

D)

NM

ean

(SD

)N

Mea

n (S

D)

Anx

iety

Base

line

346.

15 (

5.23

)29

6.28

(4.

83)

157.

07 (

5.59

)18

6.50

(5.

08)

966.

40 (

5.07

)

3-m

onth

s34

6.29

(5.

88)

295.

79 (

4.87

)15

6.07

(5.

22)

186.

67 (

4.45

)96

6.18

(5.1

6)

12-m

onth

s34

5.71

(5.

08)

295.

93 (

5.04

)15

5.97

(4.

84)

185.

83 (

4.64

)96

5.82

(4.

88)

Dep

ress

ion

Base

line

343.

35 (

3.29

)29

4.14

(3.

61)

155.

07 (

5.41

)18

4.44

(3.

19)

964.

06 (

3.75

)

3-m

onth

s34

4.12

(4.

25)

293.

83 (

3.30

)15

4.87

(4.

58)

185.

72 (

4.82

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FSC,

Firs

t Sei

zure

Clin

ic; G

QoL

, Glo

bal Q

ualit

y of

Life

; HA

DS,

Hos

pita

l Anx

iety

Anx

iety

and

Dep

ress

ion

Scal

e; L

AE

P, L

iver

pool

Adv

erse

Eve

nts P

rofil

e

277


Variables 1 2 3 4 5 6 7


2. GQoL .603** -

3. Past Worry -.280** -.321**

4. Future Worry -.319** -.261** .729**

5. HADS Anxiety -.537** -.622** .500** .479**

6. HADS Depression -.626** -.706** .402** .386** .745**

7. Perceived stigma -.316** -.471** .353** .274** .548** .549**

8. LAEP -.597** -.596** .529** .496** .826** .703** .481**

Table J1. FSC Correlation Analysis – 3 months

FSC First Seizure Clinic; GQoL Global Quality of Life; HADS Hospital Anxiety and Depression Scale; LAEP Liverpool Adverse Events Profile; (N varies between 132-158, depending on available data);**p<.01

APPENDIX J – CORRELATIONS CHAPTER 8

Variables 1 2 3 4 5 6 7


2. GQoL .467** -

3. Past Worry -.392** -.440**

4. Future Worry -.330** -.295** .829**

5. HADS Anxiety -.423** -.570** .566** .527**

6. HADS Depression -.535** -.661** .447** .399** .721**


8. LAEP -.587** -.602** .547** .484** .816** .683** .490**

Table J2. FSC Correlation Analysis – 12 months

FSC First Seizure Clinic; GQoL Global Quality of Life; HADS Hospital Anxiety and Depression Scale; LAEP Liverpool Adverse Events Profile; (n varies between 104-109, depending on available data);**p<.01

278


APPENDIX K – CORRELATIONS CHAPTER 9

Variables 1 2 3 4 5 6 7 8


2. GQoL .613** -

3. Past Worry -.288** -.307**

4. Future Worry -.248* -.191 .705**

5. HADS Anxiety -.536** -.582** .520** .471**

6. HADS Depression -.634** -.663** .450** .393** .746**


8. LAEP -.575** -.551** .571** .496** .817** .674** .456**

9. Service Satisfaction Scale .290** .249* -.266* -.204 -.264* -.236* -.507** -.269**

Table K1. RCT Correlation Analysis – 3 months

FSC First Seizure Clinic; GQoL Global Quality of Life; HADS Hospital Anxiety and Depression Scale; LAEP Liverpool Adverse Events Profile; (N varies between 89-105, depending on available data);*p<.05 **p<.01

Variables 1 2 3 4 5 6 7 8


2. GQoL .326** -

3. Past Worry -.326** -.463**

4. Future Worry -.279* -.262* .813**

5. HADS Anxiety -.305** -.543** .562** .507**

6. HADS Depression -.408** -.597** .401** .392** .707**


8. LAEP -.479** -.537** .571** .482** .790** .592** .414**

9. Service Satisfaction Scale .207 .171 .235 -.276* -.196 -.071 -.332** -.228

Table K2. RCT Correlation Analysis – 12 months

FSC First Seizure Clinic; GQoL Global Quality of Life; HADS Hospital Anxiety and Depression Scale; LAEP Liverpool Adverse Events Profile; (n varies between 71-74, depending on available data)*p<.05 **p<.01

279


Posters, Presentations and Publications arising from this thesisPanelli, R. J., Kilpatrick, C., Moore, S. M., Matkovic, Z., D’Souza, W. J., O’Brien, T. J.

(2007) The Liverpool adverse events profile: Relation to AED use and mood. Epilepsia, 48(3), 456-463.

Panelli, R., Moore, S., Kilpatrick, C., Matkovic, Z., D’Souza, W. J., & O’Brien, T. J. (2005, December). The nature of the diagnosis is not a major determinant of psychosocial well-being in First Seizure Clinic patients. Poster presented at the 76th Annual Scientific Meeting of the American Epilepsy Society Meeting, Washington DC.

Panelli, R., Moore, S., Kilpatrick, C., Matkovic, Z., D’Souza, W. J., & O’Brien, T. J. (2005, August). Do first seizure clinic patients benefit from a psychosocial support program? Platform presentation at 26th International Epilepsy Conference, Paris, France.

Panelli, R., Moore, S., Kilpatrick, C., Matkovic, Z., D’Souza, W. J., & O’Brien, T. J. (2005, April). Does a patient support program have a sustained effect to reduce levels of anxiety and depression in First Seizure Clinic patients? Poster presented at 20th Annual Scientific Meeting, Epilepsy Society of Australia, Cairns, Australia.

Panelli, R., Moore, S., Kilpatrick, C., Matkovic, Z., D’Souza, W. J., & O’Brien, T. J. (2005 February). First Seizure Clinics: Does psychosocial support influence patient outcomes? Presentation at the Australasian Society for Behavioural Health and Medicine. (ASBHM) Conference, Melbourne, Australia.

Panelli, R., Moore, S., Kilpatrick, C., Matkovic, Z., D’Souza, W. J., & O’Brien, T. J. (2004, December). The Liverpool Adverse Events Profile (LAEP) reflects anxiety and depression rather than antiepileptic drug side effects in individual patients. Poster presented at the 75th Annual Scientific Meeting of the American Epilepsy Society, New Orleans, LA.

Panelli, R. J., Moore, S., Kilpatrick, C., Matkovic, Z., D Souza, W. J., & O Brien, T. J. (2004, November). The Liverpool Adverse Events Profile (LAEP) reflects anxiety and depression rather than antiepileptic drug side effects in individual patients. Poster presented at the 19th Annual Scientific Meeting of the Epilepsy Society of Australia, Sydney, Australia.

Panelli, R., Moore, S., D’Souza, W. J., Ghougassian, D., & O’Brien, T. J. (2003, December). A quantitative study of anxiety and depression symptomatolog y in patients presenting to a first seizure clinic. Poster presented at the 75th Annual Meeting of the American Epilepsy Society, Boston, MA.

Panelli, R., Moore, S., D’Souza, W. J., Ghougassian, D., & O’Brien, T. J. ( 2003, November). First seizure clinic patients have high levels of anxiety and depressive symptomatolog y. Poster presented at the 8th Annual Scientific Meeting of the Epilepsy Society of Australia, Auckland, New Zealand.

APPENDIX L – PUBLICATIONS

280


Abbreviations

ABS Australian Bureau of Statistics

ACEP Ameican College of Emergency Physicians

ADHD Attention Deficit Hyperactivity Disorder

AED Antiepileptic Drug

AHRQ Agency for Healthcare Research and Quality

AIDS Aquired Immunodeficiency Syndrome

AIHW Australian Institute of Health and Welfare

ALS Amytrophic Lateral Sclerosis

ANOVA Analysis of Variance

APA American Psychological Association

APPGE All Party Parliamentary Group on Epilepsy

ARC Australian Research Council

BOD Burden of Disease

CDC Centers for Disease Control and Prevention

CDD Chronic Disease Directors

CNS Central Nervous System

DALY Diability Adjusted Life Year

DH Department of Health

ECG Electrocardiograph

EEG Electroencephalogram

EFV Epilepsy Foundation of Victoria

ESN Epilepsy Specialist Nurse

FSC First Seizure Clinic

GBD Global Burden of Disease

GP General Practitioner

GQOL Global Quality of Life

HADS Hospital Anxiety and Depression Scale

HIV Human Immunodeficiency Virus

HOPE Helping Other People with Epilepsy

281


HSC Center for Studying Health System Change

IBE International Bureau for Epilepsy

ICD-10 International System of Classification of Diseases and Related Health

Problems

ILAE International League Against Epilepsy

LAEP Liverpool Adverse Effects Profile

LPCC Lower Prevalence Chronic Condition

LSD Least Significant Difference

MANOVA Multivariate Analyisis of Variance

MOSES Modular Service Package Epilepsy

MRI Magnetic Resonance Imaging

NADMHPM National Association of State Mental Health Program Directors

NEWQOL Quality of Life in Newly Diagnosed Epilepsy

NHMRC National Health and Medical Research Council

NHS National Health Service

NICS National Institute of Clinical Studies

NPAC National Health Priority Action Council

NTAC National Techical Assistance Center: for state mental health planning

QOLIE- Quality of Life Epilepsy Inventory (can be -89, -31 or -10 items)

RCT Randomized Controlled Trial

SANAD Study of Standard versus New Antiepileptic Drugs

SEE Sepulveda Epilepsy Education (renamed, Seizures and Epilepsy Education

Program)

SIGN Scottish Intercollegiate Guidelines Network

SPSS Statstical Package for the Social Sciences

SSS Service Satisfaction Scale

SUDEP Sudden Unexpected Death in Epilepsy

UK United Kingdom

US United States of America

WHO World Health Organization

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The First Seizure Clinic - Swinburne Research Bank

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