th international MS Nurse workshop 1 October 2013 ...15 th international MS Nurse workshop 1 October 2013 - Copenhagen, Denmark ... Over the last decades the scientific discoveries

FINAL PROGRAMME AND ABSTRACT BOOK

15th international MS Nurse workshop1 October 2013 - Copenhagen, Denmark

General information

VenueThe live educational workshop takes place at the:

Scandic Sydhavnen HotelSydhavns Plads 152450 Copenhagen, Denmarkhttp://www.scandichotels.com

LanguageThe official language of this live educational workshop is English.

Scientific secretariatSerono Symposia International FoundationSalita di San Nicola da Tolentino, 1/b00187 Rome, Italy

Senior Project Manager, Neurology Team Leader: Serena Dell’AricciaTel.: +39 (0)6 420 413 251 - Fax: +39 (0)6 420 413 677E-mail: [email protected]

Medical Advisor: Federica Cerri

Serono Symposia International Foundation is a Swiss Foundation with headquarters in 14, Rue du Rhône, 1204 Geneva, Switzerland

Organising secretariatMeridiano Congress InternationalVia Sapri, 6 - 00185 Rome, ItalyCongress coordinator: Federica RussettiT +39 (0)6 88 595 209 - F +39 (0)6 88595 234E-mail: [email protected]

To know more visit: www.neurology.seronosymposia.org

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15th international MS Nurse workshop

Serono Symposia International Foundation live educational workshop on:

15th international MS Nurse workshop1 October 2013 - Copenhagen, Denmark

Aim of the live educational workshopOver the last decades the scientific discoveries have been changed in depth the multiple sclerosis (MS) scenario, complicating thedaily management of MS patients. The MS nurse plays a key role in the management of persons with multiple sclerosis, because ofthe strong relationship with patients during the entire course of the disease. Since the MS management is becoming morecomplicate, the MS nurse should be highly specialized, in order to guarantee assistance and support to patients, care-givers and theother health care professionals involved in MS management. The aim of this workshop isto encourage the dissemination of scientificknowledge among nurses working in the field of multiple sclerosis highlighting the daily challenges for nurse in the new MSscenario. The workshop will review how to organize MS center in a new MS era, how to recognize and handle with cognitiveimpairment and psychiatric disorders, how to deal with motor problems, pain and genito-urinary disorders.

Learning objectivesBy attending this live educational workshop the learners will be able to:• Summarize the roles of the MS nurse in a highly specialized MS center• Illustrate the cognitive and affective problems that can affect MS patients• Explain how to deal with motor impairment, genitor-urinary problems and pain

Target audienceNurses involved in the treatment of persons with multiple sclerosis.

AccreditationSerono Symposia International Foundation (www.seronosymposia.org) is accredited by the International council of Nurses (ICN) toprovide the following CNE activity for specialized nurses.

The meeting "15th MS Nurse international workshop" to be held on 1 October 2013 in Copenhagen, Denmark, is designated for amaximum of 6.6 (six,six) hours of ICN credits (ICNECs).

Serono Symposia International Foundation (SSIF) adheres to the principles of the Good CME Practice Group (gCMEp)

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All Serono Symposia International Foundation programmes are organized solely to promote the exchange and dissemination of scientific and medical information. Noforms of promotional activities are permitted. There may be presentations discussing investigational uses of various products. These views are the responsibility of thenamed speakers, and do not represent an endorsement or recommendation on the part of Serono Symposia International Foundation. This programme is made possiblethanks to educational grants received from: Arseus Medical, Besins Healthcare, Bristol-Myers Squibb, Celgene, Centre d’Esclerosi Multiple de Catalunya (Vall d’HebronUniversity Hospital), Centre Hépato-Biliaire (Hôpital Paul Brousse), Croissance Conseil, Cryo-Save, Datanalysis, Dos33, Esaote, Ferring, Fondazione Humanitas,Fundación IVI, GE Healthcare, GlaxoSmithKline Pharmaceuticals, IPSEN, International Society for Fertility Preservation, Johnson & Johnson Medical, K.I.T.E., Karl Storz,Lumenis, Merck Serono Group, PregLem, Richard Wolf Endoscopie, Sanofi-Aventis, Stallergenes, Stopler, Teva Pharma, Toshiba Medical Systems, Université Catholiquede Louvain (UCL), University of Catania.

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We value your opinion!

We are continually trying to develop and improve our educational initiative to provide you with cutting-edge learning activities.

During this workshop you will be asked to answer a real-time survey and after this educational event you will be receiving anonline survey to help us to better tailor our future educational initiatives.

We thank you for participating!

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Scientific organizerGiancarlo Comi Department of NeurologyInstitute of Experimental NeurologyVita-Salute San Raffaele UniversityMilan, Italy

Workshop moderatorsAmy Perrin RossDepartment of NeurosciencesLoyola University Medical CenterOak Brook, Illinois, USA(Past President of IOMSN -International Organization of MS Nurses)

Roberta MottaItalian Multiple Sclerosis SocietyRehabilitation CentreGenoa, Italy

This live educational workshop is endorsed by ECTRIMS(European Committee for Treatment and Research InMultiple Sclerosis).

MS nurse workshop steering committeeSharalyn AndersonDepartment of NeurologyNorth East Lincolnshire Care Trust Plus Grimsby, UK

Dawn CarleDepartment of NeurologyOttawa HospitalGeneral CampusOttawa, Ontario, Canada

Giancarlo Comi Department of Neurology Institute of Experimental Neurology Vita-Salute San Raffaele UniversityMilan, Italy

Sara DishonThe MS Centre Carmel Medical Centre Haifa, Israel

Mark S. FreedmanThe Ottawa HospitalMS Research Unit Ottawa, Ontario, Canada

Barbara KieserNeurologische Klinik KantonsspitalKuttingen, Switzerland

Dawn LangdonDepartment of PsychologyRoyal Holloway University of LondonLondon, UK

Roberta MottaItalian Multiple Sclerosis Society Rehabilitation CentreGenoa, Italy

Amy Perrin RossDepartment of Neurosciences Loyola University Medical Center Oak Brook, Illinois, USA

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List of faculty members

Maria Pia AmatoDepartment of Neurological and Psychiatric SciencesUniversity of FlorenceFlorence, Italy

Dawn CarleDepartment of NeurologyOttawa HospitalGeneral CampusOttawa, Ontario, Canada

Giancarlo ComiDepartment of NeurologyInstitute of Experimental NeurologyVita-Salute San Raffaele UniversityMilan, Italy

Monica FalautanoFunctional Unit of PsychologyDepartment of Neurology and Clinical NeurophisiologyIRCCS Fondazione San Raffaele del Monte TaborMilan, Italy

Anthony FeinsteinDepartment of PsychiatryUniversity of TorontoToronto, Canada

Óscar FernándezNeuroscience Institute Service of NeurologyUniversity Regional Hospital “Carlos Haya”Malaga, Spain

Mark S. FreedmanThe Ottawa HospitalMS Research UnitOttawa, Ontario, Canada

Hüseyin HüseyinNeurology Department Luton & Dunstable NHS TrustLuton, UK

Jürg KesselringDepartment of NeurorehabilitationValens Clinic Rehabilitation CenterValens, Switzerland

Dawn LangdonDepartment of PsychologyRoyal Holloway University of LondonLondon, UK

Diane LowdenMS ClinicMontreal Neurological HospitalMontreal, Quebec, Canada

Fred D. LublinThe Corinne Goldsmith Dickinson Center for Multiple SclerosisIcahn School of Medicine at Mount SinaiNew York, USA

Roberta MottaItalian Multiple Sclerosis SocietyRehabilitation CentreGenoa, Italy

Amy Perrin RossDepartment of Neurosciences Loyola University Medical Center Oak Brook, Illinois, USA

Jaume Sastre-GarrigaMultiple Sclerosis Centre of Catalonia (Cemcat)Neurology-Neuroimmunology DepartmentVall d’Hebron University HospitalBarcelona, Spain

Scientific programme

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0Session Chair: Roberta Motta (Italy)

09.00 L1: Personalized medicine and new challenges for the MS nurseGiancarlo Comi (Italy)

09.20 L2: The new landscape of MS centers organizationMark S. Freedman (Canada)

09.40 L3: The new challenges in MS centers: the nurseperspectiveDawn Carle (Canada)

10.00 L4: The comprehensive interaction between MScenter and patient at homeAmy Perrin Ross (USA)

10.30 Discussion

10.45 Coffee break

Session Chair: Roberta Motta (Italy)

11.10 L5: Cognitive problemsMaria Pia Amato (Italy)

11.30 L6: Cognitive rehabilitationMonica Falautano (Italy)

11.50 L7: How to handle with psychiatric problems: the nurse perspectiveDiane Lowden (Canada)

12.10 L8: How to handle with psychiatric problems: the specialist perspectiveAnthony Feinstein (Canada)

12.30 L9: Psychotherapy: different approachesDawn Langdon (UK)

12.50 Discussion

13.00 Lunch

14.00 Poster session

Improving organization in the new MS eraSession I

Cognitive and psychological issues Session II

Session Chair: Óscar Fernández (Spain)Session Chair: Amy Perrin Ross (USA)

14.30 L10: Genito-Urinary problems in MS patientÓscar Fernández (Spain)

14.50 L11: Motor problems and rehabilitation: the doctorperspectiveJürg Kesselring (Switzerland)

15.10 L12: NutritionRoberta Motta (Italy)

15.30 L13: Pain and paroxysmal events managementFred D. Lublin (USA)

15.50 Discussion

16.00 Coffee break

Session Chair: Amy Perrin Ross (USA)

16.15 L14: Psychological and social impact of MS diagnosisDawn Langdon (UK)

16.35 L15: Fostering adherence to DMDsJaume Sastre-Garriga (Spain)

16.55 L16: Fostering adherence to DMDs: the nurseperspectiveHüseyin Hüseyin (UK)

17.15 L17: From the first symptoms to highly disabledpatients: the role of MS nurse in the differentphases of MSAmy Perrin Ross (USA)

17.35 Discussion

17.50 Concluding remarks

End of the live educational workshop

Symptoms management Session III

Interaction with MS patientsSession IV

Tuesday, 1 October 2013

08.45 Serono Symposia International Foundation (SSIF) opening and introduction Giancarlo Comi (Italy), Roberta Motta(Italy), Amy Perrin Ross (USA)

Disclosure of faculty relationships

Serono Symposia International Foundation adheres to guidelines of the European Accreditation Council for Continuing MedicalEducation (EACCME®) and all other professional organizations, as applicable, which state that programmes awarding continuingeducation credits must be balanced, independent, objective, and scientifically rigorous. Investigative and other uses for pharmaceuticalagents, medical devices, and other products (other than those uses indicated in approved product labeling/package insert for theproduct) may be presented in the programme (which may reflect clinical experience, the professional literature or other clinical sourcesknown to the presenter). We ask all presenters to provide participants with information about relationships with pharmaceutical ormedical equipment companies that may have relevance to their lectures. This policy is not intended to exclude faculty who haverelationships with such companies; it is only intended to inform participants of any potential conflicts so that participants may form theirown judgements, based on full disclosure of the facts. Further, all opinions and recommendations presented during the programmeand all programme-related materials neither imply an endorsement nor a recommendation on the part of Serono SymposiaInternational Foundation. All presentations represent solely the independent views of the presenters/authors.

The following faculty provided information regarding significant commercial relationships and/or discussions of investigational ornon-EMEA/FDA approved (off-label) uses of drugs:

Maria Pia Amato Declared the receipt of honoraria or consultation fees from: Sanofi Aventis, Biogen Idec, Teva, Novartis,Merck Serono, Almirall. Declared to be a member of a company advisory board, board of directors orother similar group: Sanofi Aventis, Teva, Novartis, Merck Serono.

Dawn Carle Declared receipt of honoraria or consultation fees from Serono Symposia International Foundation.

Giancarlo Comi Declared receipt of honoraria or consultation fees from: Novartis, Teva, Sanofi, Merck Serono, Bayer,Biogen, Actelion, Almirall, Genzyme, Serono Symposia International Foundation.

Monica Falautano Declared no potential conflict of interest.

Anthony Feinstein Declared the receipt of grants and contracts from MS Society of Canada and receipt of honoraria andconsultation fees from Merck Serono, Novartis, Biogen, Teva.

Óscar Fernández Declared receipt of honoraria and consultation fee from Merck-Serono.

Mark S. Freedman Declared no potential conflict of interest.

Hüseyin Hüseyin Declared receipt of honoraria or consultation fees: Roche, Biogen Idec, Merck Serono.

Jürg Kesselring Declared to be member of a company advisory board, board of directors or other similar group: Novartis,Data safety monitoring Fingolimod.

Dawn Langdon Declared the receipt of grants and contracts: Sponsorship from Bayer Healthcare, Novartis, Biogen,Merck Serono.

Diane Lowden Declared receipt of honoraria or consultation fees from: EMD Serono, Teva Canada Innovation, Bayer,Biogen Idec, Sanofi-Aventis, Genzyme.

Fred D. Lublin Declared Sources of Funding for Research: Acorda Therapeutics, Inc.; Biogen Idec; NovartisPharmaceuticals Corp; Teva Neuroscience, Inc.; Genzyme; Sanofi; Celgene; NIH; NMSS ConsultingAgreements/Advisory Boards/DSMB: Bayer HealthCare Pharmaceuticals; Biogen Idec; EMD Serono,Inc.; Novartis; Teva Neuroscience; Actelion; Sanofi-Aventis; Acorda; Questcor; Roche, Genentech;Celgene; Johnson & Johnson; Revalesio; Coronado Bioscience, Genzyme, MedImmune; Bristol-MyersSquibb, Xenoport, Receptos; Forward Pharma. Co-Chief Editor: Multiple Sclerosis and Related Diseases.Current Financial Interests/Stock Ownership: Cognition Pharmaceuticals, Inc.

Roberta Motta Declared no potential conflict of interest.

Amy Perrin Ross Declared receipt of honoraria or consultation fees from: Bayer Healthcare, Pfizer Inc., EMD Serono,TEVA, Acorda, Genzyme, Novartis, Biogen Idec, Questcor. Declared to be member of a company advisoryboard, board of directors or other similar group: Bayer Healthcare, Pfizer Inc., EMD Serono, TEVA,Acorda, Genzyme, Novartis, Biogen Idec, Questcor.

Jaume Sastre Garriga Declared receipt of honoraria and consultation fee from Biogen, Novartis. He declared also participationin company sponsored speaker’s bureau: Serono Symposia International Foundation, Merck-Serono,Novartis, TEVA.

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Abstracts

L1. Personalized medicine and new challenges for the MSnurse

Abstract not in hand at the time of printing.

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Giancarlo ComiDepartment of Neurology, Institute of Experimental Neurology, Vita-Salute San Raffaele University, Milan, Italy

L2. The new landscape of MS centers organization

The field of MS has grown exponentially over the years as we gain more understanding of its pathogenesis and discover a numberof new agents for its treatment. Patients are presenting themselves earlier and are becoming more informed such that theirdemands for more information about their individual prognosis, needs for treatment and follow-up are ever more straining on thephysician trying to cope with other patients with the same and other diseases. Treatment is not simple and to insure that patientsadhere to a regimen requires that they have a full understanding of its realistic goals and expectations. Newly diagnosed patientsneed many questions answered regarding their individual condition. They need to know what to expect and when to call and what tocall for. Successful symptom management requires sometimes many interactions to get the right drug and dosage for the rightcomplaint and insure that it is having its desired effect.

As a result of the complex nature of MS care, “centers” of excellence have arisen that focus their interests around the needs of thepatient. Starting with neurologists or rehabilitation specialists with a keen interest in MS care, a center usually comprises nurses,physiotherapy or occupational therapists, a social worker or counselor and a keen administrative staff. If the center also has aninterest in clinical or laboratory research, specialized clinical trial nurses and technicians (e.g. OCT) may be needed. Centers ofexcellence must be able to provide teaching and everyday patient care, in addition to contributing to research in the field.

Comprehensive care for MS patients today requires special relationships with haematologists, ophthalmologists, urologists,physiatrists, psychiatrists, neuropsychologists, just to name a few of the key individuals.

Nurses today are an absolute necessity for a successful MS practice. New patients need counseling about the disease and itsmanifestations, diagnosis, course and overall prognosis. Established patients need more attention on symptom management anddisease modifying medications. All patients need consideration of their individual social situations. Attacks may not all be true“relapses” and each may require review and possibly examination and treatment. At a minimum, details of each “attack” should berecorded as it may be the main way in which patients can meet eligibility for clinical trials. There is simply no way for physicians toaccomplish many or most of these requirements. For this reason, a network of skilled, experienced and properly trained MS nursesand personnel is vital to the advancement of the field and the maintenance of a high standard of MS care for our patients.

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Mark S. FreedmanThe Ottawa Hospital, MS Research Unit, Ottawa, Ontario, Canada

L3. The new challenges in MS centers: the nurseperspective

In the last few years, the scientific progresses in MS field and the development of new therapeutic strategies have changed in depththe MS scenario. All the health professionals involved in MS management should face with new issues in their daily practice andhighly specialized MS centers should be reorganized and remodeled in order to accomplish new objectives and satisfy emerging andchanging patients needs. MS nurse is a key member of multidisciplinary management, having a direct role in drugs administration,side effects monitoring and in patients and care‐givers education and support.

This presentation will go through the Top Five challenges that Multiple Sclerosis Clinics are facing in the 21st Century. As well, it willtouch on the essential roles of the nurse as a member of a multi-disciplinary team in an MS Clinic and Research based Unit and/orCentre.

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Dawn CarleDepartment of Neurology, Ottawa Hospital, General Campus, Ottawa, Ontario, Canada

L4. The comprehensive interaction between MS centerand patient at home

People with MS and their families face many challenges in their daily lives. They live with an unpredictable disease which oftenrelapses and remits without warning. The MS nurse is in a unique position to assess these patients and offer a wide variety ofassistance both in and out of the hospital.

The purpose of this presentation is to describe the domains of MS nursing and discuss the comprehensive interaction with patientsout of the hospital. The domains of MS nursing as defined by the International Organization of MS Nurses are: Clinical Practice,Advocacy, Education and Research. The nurse as a member of the multidisciplinary team is in a unique position to bring home basedcare to the person with MS and their families. The MS nurse can assist with identifying relapses, managing symptoms, providingpsychosocial support and initiating and managing disease modifying therapies at home. The nurse plays a pivotal role in medicationadherence.

People with advanced MS also require a significant amount of care at home and the MS nurse is very important in assisting caregivers with daily management. Changes to the daily routine may need to be made based on current and changing MS symptoms.Often with the assistance of the MS nurse the patient is most effectively managed in the home thus avoiding costly hospitaladmission.

The comprehensive interaction with patients out of the hospital from the nurse’s perspective results in an important partnershipbetween the physician, patient, family and nurse to promote healthy living anf hope.

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Amy Perrin RossDepartment of Neurosciences, Loyola University Medical Center, Oak Brook, Illinois, USA

L5. Cognitive problems

Only during the past 20 years clinicians have become aware of the prevalence and functional impact of MS-related cognitiveimpairment. Cognitive dysfunction is highly variable and estimates of its frequency range from 43% to 65% of the cases. The domainsmost commonly impaired are episodic memory, complex attention and information processing speed, executive functions and verbalfluency. Language, semantic memory and attention span are less frequently involved.

Cognitive dysfunction can have a dramatic impact on several aspects of quality of life, independently by the degree of Physicaldisability, and is one of the most important predictors of the patient work status. Attempt therapeutic approaches include the useof disease-modifying drugs, symptomatic drugs for fatigue and donepezil, as well as different rehabilitative programs.

Due to the high prevalence and great functional impact of MS-related cognitive impairment, the search for effective therapeuticstrategies is an urgent priority for future research.

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Maria Pia AmatoDepartment of Neurological and Psychiatric Sciences, University of Florence, Florence, Italy

L6. Cognitive rehabilitation

Multiple sclerosis (MS) is a demyelinating disease of the central nervous system that commonly leads to inflammatory and atrophicbrain pathology, often causing cognitive impairment. The different course of the disease, the time of the onset, the lesion burden,the age, the social and personological status of the subject and the “cognitive reserve” can all occur in the expression of the cognitivefunctions and in their possible alteration. Many study stressed the importance of neuropsychological evaluation in the MS tocharacterize the type of disease and to monitoring the course of cognitive dysfunctions. The reported prevalence of cognitiveimpairments in people with MS ranges from 40–65% depending on study setting. The functions most consistently affected arecontrolled attentional processing, speed of information processing, explicit anterograde memory, abstract reasoning and executivefunctions. This evidence introduce the query about the efficacy of the use of cognitive interventions in people with MS. In fact theremediation of cognitive impairment is less well researched and understood. The Cochrane Collaboration Library found inconclusiveevidence of the effectiveness of intervention, partly because of the large number of outcome measures that are frequently used inthis study, and partly because of small sample size. Further, the small number of study actually conducted means that it’s difficultto generalise about whether psychological approaches treating cognitive impairment are helpful. A review (O’Brien 2008) concludethat cognitive rehabilitation in MS is in its relative infancy and more methodologically rigorous research is needed to determine theeffectiveness and efficacy of various cognitive rehabilitation interventions. This findings should be motivate to assess randomisedand double-blind trials focusing on the development of a gold standard for neuropsychological test measures and training tools. Amore recent review (Rosti-Otajärvi 2011) indicates low level evidence for the positive effects of neuropsychological rehabilitation inMS. In this systematic review, recommendations are given for improving the quality of future studies in this area.

Neuroplasticity is a fundamental issue that supports the scientific basis for treatment of acquired brain damage with goal-directedexperiential therapeutic programs in the context of rehabilitation approaches to the functional consequences of the damage. FMRIhas shown potential as tool for visualization of cognitive training effects and even for verification of its efficacy. On the other hand it’snecessary to consider the rehabilitative training as a process involving different steps and people. In this way it’s necessary, in theclinical practice, assess an extensive neuropsychological evaluation, collect information about the personality features, the qualityof live and the motivation of the patient, plan and explain the intervention and use specific tools to verify the efficacy.

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Monica FalautanoFunctional Unit of Psychology, Department of Neurology and Clinical Neurophisiology,IRCCS Fondazione San Raffaele del Monte Tabor, Milan, Italy

References:- Thomas PW, Thomas S, Hillier C, Galvin K, Baker R. Psychological interventions for Multiple Sclerosis - The Cochrane Collaboration 2007, revised 2009.- Cicerone KD, Dahlberg C. Malec JF, et al. Evidence-based cognitive rehabilitation: Update review of the literature from 1998throught 2002. Arch Phys MedRehabil. 2005; 86(8): 1681-1692.

- Amato MP, Zipoli V. Portaccio E. Multiple Sclerosis-related cognitive changes: A review of cross-sectional and longitudinal studies. J. of Neurol. Sc. 2006, 245:41-46.

- Wilson B.A. OBE. Cognitive Rehabilitation in the 21st Century. Neurorehab. and Neurall Repair Vol. 16 n°2 2002. - O’Brien AR, Chiaravalloti N., Goverover Y, DeLuca J. Evidenced-based cognitive rehabilitation for persons with MS: a review of the literature. Arch Phys MedRehabil, 2008, 89: 761-769.

- Sumowski JF, Glenn RW, Chiaravalloti N, and De Luca J. Intellectual enrichment lessens the effect of brain atrophy on learning and memory in multiple sclerosis.Neurology June 15, 2010 vol. 74 no. 24 1942-1945.

- Vallar, G.; Cantagallo, A.; Cappa, S.; Zoccolotti, P et al. La riabilitazione neuropsicologica. Un analisi basata sul metodo evidence-based medicine. Springler 2012- Rosti-Otajärvi E M et al.: “Neuropsychological rehabilitation for multiple sclerosis”, Cochrane Database of Systematic Reviews, Issue 11, art. n. CD009131.DOI:10.1002/14651858 dec. 2011.

- Sumowski J.F. et al. Brain reserve and cognitive reserve in multiple sclerosis. Neurology 80 June 11, 2013.

L7. How to handle with psychiatric problems: the nurseperspective

Affective and emotional problems arise frequently in patients with multiple sclerosis (MS), either as a direct result of the underlyingdisease process or as a sequelae to the challenges of coping with an unpredictable, potentially disabling chronic illness.Psychological reactions to the diagnosis of MS, the neuropathology of the disease process, anxiety related to the uncertainty of futureevents or anticipatory grief over the perceived or feared loss of former self can all have an impact on the emotional life of individualswe care for. The incidence of conditions such as depression, anxiety and suicidality are known to be increased in MS and organicchanges to affect such as euphoria or emotional lability can also be increased in those with MS. Emotional responses to illness suchas grief, low self-esteem, withdrawal, loss of interest and anger can also be part of the clinical profile. When collected in a systematicway, information elicited in a nursing assessment interview can be used to identify relevant affective and emotional issues faced bypatients. In addition, this information may serve as a framework for management of these issues by nurses, as well as referral toother health professionals involved in the care of patients with MS. Nurses are well-positioned to assess, educate, intervene andevaluate effectiveness of interventions, with respect to affective and emotional issues, as part of the comprehensive care team.

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Diane LowdenMS Clinic, Montreal Neurological Hospital, Montreal, Quebec, Canada

L8. How to handle with psychiatric problems: thespecialist perspective

Abstract not in hand at the time of printing.

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Anthony FeinsteinDepartment of Psychiatry, University of Toronto, Toronto, Canada

L9. Psychotherapy: different approaches

It is not surprising that people living with a chronic, degenerative and largely unpredictable disease experience reduced well-beingand an increased prevalence of neuropsychiatric syndromes. Randomised controlled trials have evaluated both “pure” therapeuticinterventions, such as cognitive behavioual therapy (CBT), and more heterogenous and comprehensive interventions, initially basedon research in other conditions and clinical experience in MS. Interventions delivered over the internet offer increased accessibilityand patient control. The more targeted studies of CBT have shown improvements in depression and anxiety. Interventions aimed atimproving adjustment have reduced depression and may increase self-efficacy and resilience to the disease. Behaviouralapproaches have demonstrated efficacy on depression and fatigue and may affect the primary disease process.

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Dawn LangdonDepartment of Psychology, Royal Holloway University of London, London, UK

References:- Dennison L, Moss-Morris R.Cognitive-behavioral therapy: what benefits can it offer people with multiple sclerosis? Expert Rev Neurother. 2010 Sep;10(9):1383-90

- Heesen C, Köpke S, Kasper J, Poettgen J, Tallner A, Mohr DC, Gold SM. Behavioral interventions in multiple sclerosis: a biopsychosocial perspective.Expert RevNeurother. 2012 Sep;12(9):1089-100

L10. Genito-Urinary problems in MS patient

Multiple sclerosis (MS) is a frequent chronic neurologic disease in young persons. Cause is unknown. Both genetic susceptibilityplus environmental factors have been involved as needed for the development of the disease. Treatment to modify pathogenesis isonly partially efficacious.

MS produces multiple lesions along the neuraxis, all neurological systems are affected. A low percentage of patients presentsinitially with urologic complaints, alone or associated with other neurologic symptoms. Anyhow, there may be evidence of urologicdysfunction in clinically silent MS patients. During the course of the disease the majority of patients develop urinary symptoms(urgency, frequency, urge/incontinence, hesitancy, retention). The severityof bladder symptoms is unrelated to theduration of thedisease, but parallels the severity of other neurologic symptoms, particularly those due to pyramidal tract involvement. For themajority of MS patients the bladder symptoms are troublesome rather than life threatening. Renal failure attributable to neurogenicbladder dysfunction is uncommon.

Genital alterations are also infrequent as an onset symptom, but are frequent along the course of the disease (around 70% will sufferfrom erectile dysfunction, reduced libido, delayed or loss of ejaculation, reduced genital sensation in males. In females reducedlibido, orgasmic dysfunction and reduced vaginal lubrication and sensation are common) causing a negative impact on the qualityof life of patients.

Many of these problems have symptomatic treatment. The treatment is directed to prevent further complications, consequently anincrease ofQoL is obtained. Adequate workup and individualised treatment are paramount in the case of genitourinary alterations.

Nowadays, the majority of the symptoms can be treated or alleviated with conservative treatments. Expert urological orgynaecological consultation should be used only if more aggressive diagnostic or therapeutic measures are needed.

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Óscar FernándezNeuroscience Institute Service of Neurology, University Regional Hospital “Carlos Haya”, Malaga, Spain

L11. Motor problems and rehabilitation: the doctorperspective

Abstract not in hand at the time of printing.

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Jürg KesselringDepartment of Neurorehabilitation, Valens Clinic Rehabilitation Center, Valens, Switzerland

L12. Nutrition

Multiple Sclerosis (MS) is a debilitating neurological disease that affects people in early adulthood. Characteristic pathology of MShas been well described but etiology of the disease is still unknown, despite decades of research and the identification of stronggenetics and environmental candidates for susceptibility.

Nutritional status and dietary habits in MS patients have not been extensively studied or reported but patients with MS will sufferfrom different types of malnutrition which is often unrecognized causing fatigue and worsening the major symptoms. Malnutritionhas been associated with impairment of the immune system, these findings emphasize the need of nutritional support in MSpatients. The majority of MS patients use a different alternative therapy, which often includes special diets or dietary supplementsin order to improve their health. Several nutritional compounds have been investigated as a possible treatment in MS, mostlypolyunsaturated fatty acids and vitamin D but their role in the treatment are to be confirmed.

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Roberta MottaItalian Multiple Sclerosis Society, Rehabilitation Centre, Genoa, Italy

References:- Farinotti M et all. Dietary interventions for multiple sclerosis. Cochrane Database Syst Rev. 2012 Dec 12;12:CD004192. - Habek M, Hojsak I, Brinar VV. Nutrition in multiple sclerosis. Clin Neurol Neurosurg. 2010 Sep;112(7):616-20.

L13. Pain and paroxysmal events management

Management of the symptoms of MS is as important as treating with a disease-modifying agent and may involve a larger segmentof the MS population. No matter what stage the MS is in, there is usually something one can do to improve the quality of life andrelieve distress in patients. Of the symptomatic therapies available, those that relieve pain are extremely important. Sixty-threepercent of MS patients report having pain. Pain in MS may be neuropathic or result from disuse, weakness, sensory loss ormechanical irregularities. Neuropathic pain can affect any area but most commonly involves the extremities. Trigeminal neuralgiais a less common form of neuropathic pain that occurs in MS. Neuropathic pain is usually managed with an anticonvulsant typemedication. Other types of pain should be addressed directly by trying to eliminate the cause of the pain; e.g., bracing of unstablejoints.

Paroxysmal events in MS tend to be Stereotyped, of sudden onset, brief duration and repetitive. These include spasms, pain,paresthesias, Lhermitte’s phenomenon, Uhthoff’s phenomenon and pathological laughing/crying. These can be treated withbaclofen, tizanidine, anticonvulsants, and tricyclic antidepressants. Tonic spams can be treated with gabapentin, pregabalin,carbamazepine, oxcarbazepine, selegiline or L-dopa.

The symptoms discussed here, as with all MS produced symptoms, should be vigorously pursued and treated aggressively toimprove the quality of life of all patients.

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Fred D. LublinThe Corinne Goldsmith Dickinson Center for Multiple Sclerosis, Icahn School of Medicine at Mount Sinai, New York, USA

L14. Psychological and social impact of MS diagnosis

The process and experience of diagnosis poses many challenges for people who are found to have MS. Psychiatric symptoms anddiagnoses have a high prevalence around the time of diagnosis and may continue for many months. Comorbidity for psychiatricconditions at the time of diagnosis has been reported at 40%. Recently diagnosed patients report lower HRQoL in both the physicaland mental domains. Depression, fatigue and apathy were all elevated, compared to healthy controls. MS patients and their partnersalso have high levels of anxiety and distress in the first years after diagnosis.

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Dawn LangdonDepartment of Psychology, Royal Holloway University of London, London, UK

References:- Janssens AC, Buljevac D, van Doorn PA, van der Meché FG, Polman CH, Passchier J, Hintzen RQ. Prediction of anxiety and distress following diagnosis of multiplesclerosis: a two-year longitudinal study. Mult Scler. 2006 Dec;12(6):794-801.

- Janssens AC, van Doorn PA, de Boer JB, van der Meché FG, Passchier J, Hintzen RQ. Impact of recently diagnosed multiple sclerosis on quality of life, anxiety,depression and distress of patients and partners. Acta Neurol Scand. 2003 Dec;108(6):389-95.

- Kern S, Schrempf W, Schneider H, Schultheiss T, Reichmann H, Ziemssen T.Neurological disability, psychological distress, and health-related quality of life inMS patients within the first three years after diagnosis. Mult Scler. 2009 Jun;15(6):752-8.

L15. Fostering adherence to DMDs

Evidence from a large number of clinical trials has clearly demonstrated the benefit of immunomodulatory therapies in MS. It is alsoclear that the therapies available currently are not without side effects and their modes of administration can still be cumbersomefor some patients. Additionally, the first-line immunomodulatory drugs are only partially effective in some patients and negativeoutcomes such as relapses and progression of disability are still to be expected. Overall, these factors affect adherence to treatment,and poor adherence may render the therapeutic efforts futile. Most studies focusing on adherence have used as an outcome thenumber of patients who stop therapy with a given drug; others have investigated the number of missing doses. Several studies usingthe first approach have shown that most drop-outs occur in the early phases of therapy; in this regard, management of side effectsof therapies, which is most important at therapy onset, is crucial, as it is responsible for almost half of all discontinuations. The side-effects profiles of interferon (IFN) beta preparations and glatiramer acetate are not identical. In the case of IFN beta preparations, itis especially important to manage flu-like symptoms at onset of therapy. Several strategies can be implemented to diminish patientdiscomfort, such as gradual dose increase and concomitant use of non-steroidal anti-inflammatory drugs. Other side effects suchas injection-site reactions, flushing and laboratory abnormalities also need to be monitored closely. Another important factor relatedto treatment discontinuation is perceived lack of efficacy as a consequence of patients having unrealistic expectations of treatmenteffects; therefore, proper management of treatment expectations is needed from the outset of treatment with disease-modifyingdrugs. Nurse-led patient education therapy initiation is clearly helpful to manage patients’ expectations and to anticipate and reducethe impact of side effects on adherence to treatment. In any case, individualized monitoring of treatment adherence is highlyrecommended in clinical daily practice to achieve the levels of efficacy seen in clinical trials.

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Jaume Sastre-GarrigaMultiple Sclerosis Centre of Catalonia (Cemcat), Neurology-Neuroimmunology Department, Vall d’Hebron University Hospital,Barcelona, Spain

L16. Fostering adherence to DMDs: the nurse perspective

Multiple Sclerosis (MS) is a chronic disabling neurological condition for which there is no known cure.

At present there are number of disease modifying therapies (DMTs) for reducing the relapse rate with a possibility of slowing downthe progression and long term disabling effect of the disease.

These DMTs have modest efficacy, however to achieve this patients must comply with the prescribed therapeutic regimen and learnto tolerate side effects. A number of studies demonstrated that there is a wide variation to adherence and anything other than 100%compliance can affect the achievement of the expected efficacy.

Patient adherence to therapy is dependent upon their level of knowledge, understanding, expectations of therapy and the on-goingguidance and support they receive.

Nurses are pivotal to ensure that patients have the knowledge they require, are involved in decision making and supported duringtheir therapy in order to achieve high adherence.

This presentation will focus on how the MS nurse can have the necessary input in supporting patients with selection of the righttreatment and in self-managing their therapies to achieve the maximum effect of the DMT.

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Hüseyin HüseyinNeurology Department, Luton & Dunstable NHS Trust, Luton, UK

L17. From the first symptoms to highly disabled patients:the role of MS nurse in the different phases of MS

The diagnostic process in MS has advanced significantly in recent years. As a result patients are diagnosed earlier and this presentsmany challenges to the MS nurse. People with MS are also living, longer healthier lives but disability still advances in many. The MSnurse must be aware of the many stages of MS that are encountered today. Education is key regardless of the stage of the disease.Newly diagnosed patients should be educated about the disease process, symptoms and the role of disease modifying agents. Theymust also learn about MS relapses and treatment options. With the expanding number of MS treatments the nurses must constantlyupdate their knowledge about the therapies, risks and benefits to enable patients to make informed decisions about treatment.Patients should also be educated about non-pharmacologic options for MS management including a healthy lifestyle, nutrition andexercise. Helping patients understand the difference between MS symptoms and MS relapses is also important.

As MS progresses patients are challenged by living with various symptoms including less visible symptoms such as cognitiveimpairment, fatigue and depression. It is important to stress adherence to disease modifying therapy despite occasional relapsesand ongoing MS symptoms. Within the advocacy role nurses work on behalf of patients for access to healthcare, medication, housingand transportation.

MS nurses also care for people who have been living with MS for many years. These people may have been diagnosed before diseasemodifying therapies became available or have had sub-optimal responses to therapy. They may be experiencing increasing disabilityas time goes on. The nurse can be a vital link in the MS team to ensure the patients have access to symptomatic treatment includingongoing rehabilitation. The MS nurse is a competent expert who works with people with MS to share knowledge, strength and hope.

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Amy Perrin RossDepartment of Neurosciences, Loyola University Medical Center, Oak Brook, Illinois, USA

Posterpresentations

P1. Development of an interactive fatigue educationresource for persons with multiple sclerosis

1 - University of Alberta, Edmonton, Alberta, Canada;2 - University of Toronto, Toronto, Ontario, Canada;3 - Queen’s University, Kingston, Ontario, Canada.

IntroductionSeveral pamphlets and websites are available to educate people with MS about fatigue. Despite the comprehensive nature of someof these resources, many are limited in their ability to enable persons with MS to personalize this information and translate it intoaction.

Materials and methodsWe developed an interactive fatigue education resource that allows persons with MS to take a more personalized and active approachto learning about and managing their fatigue. This resource includes interactive ways to evaluate fatigue, how/when to communicatewith others (including healthcare providers) about fatigue, and where to go for help. This tool also allows persons with MS to identifywhat factors may be contributing to fatigue (e.g., depression, sleep disorders). Based on a self-evaluation process, people with MSare then directed to ideas and strategies best suited to dealing with those factors most relevant to their own lives, based on currentevidence.

ResultsThe research literature was searched on the assessment of fatigue and sources of fatigue (primary and secondary factors). Basedon findings, an interactive Microsoft PowerPoint® presentation was created for people with MS. Depression, sleep disorders,medications, lack of physical activity, and mental exertion were described in detail regarding how they contribute to fatigue and whatstrategies could be used to address these factors. Examples of practical fatigue management goals were provided, along with linksto apps, programs, and other resources. In addition, information about when to seek help for each particular source of fatigue wasincluded.

ConclusionsThe hope of this new interactive fatigue education resource is that it will allow people with MS to self-monitor the most likely sourcesof their fatigue and select potential management strategies given their specific personal, disease, and environmentalcharacteristics. It will also help them to recognize when it is appropriate and necessary to seek health care assistance.

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Karen V.L. Turpin 1, Nadine Akbar 2, Marcia Finlayson 3

NOTES

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