Asthma.org.uk. Identifying the treatment uncertainties for people living with asthma Dr Samantha Walker, Research Liaison Officer 17 September 2007.

asthma.org.uk

Identifying the treatment uncertainties for people living with asthma

Dr Samantha Walker, Research Liaison Officer17 September 2007

Involving people living with asthma in research Our commitment to involvement

JLA Asthma Working Partnership Asthma Patient Working group Key areas of involvement

Surveying people living with asthma about their concerns about asthma treatment

Categorising responses & forming indicative questions

The shared prioritised asthma treatment uncertainties

Evaluation of our experiences

Overview

Should we involve people with asthma in research?

YES!

We work with people with asthma, healthcare professionals and

researchers to develop, share and bring together expertise to:

help people increase their understanding and reduce the effect of asthma on their lives

highlight best practice to improve the lives of people with asthma provide a vital link between research and people who are affected

by asthma highlight the key issues, help identify priorities for asthma

research provide support to make research more effective.

Our commitment to involvement

Asthma UK is the charity dedicated to improving the health and well-being of the 5.2 million people in the UK who have asthma.

Funding research that is relevant to needs and aspirations of people with asthma.

We encourage and influence others to invest in asthma.

Moving asthma up the political agenda.

Advances in knowledge are communicated to a wide audience.

Helps to develop quality resources and best practice guidelines.

This work can only be achieved though greater dialogue

and understanding between clinicians, researchers and

people with asthma.

Research, Policy & Services objectives

Involving people living with asthma in research

Basic & Clinical Research Strategy consultations

Research & Policy Volunteers Postal surveys Website polls Focus groups Project working groups E-campaigners

Representation on committees

Speak Up for Asthma Volunteers

Users & Carers Forum and Youth Forum

National Asthma Panel (Annual opinion poll, Ipsos MORI)

Adviceline feedback questionnaires

Fundraising and events eg Medicine & Me: Asthma (2004), Medicine & Me: Asthma Research (2007)

How is Asthma UK’s work informed by the opinions of people with asthma?

JLA Asthma Working Partnership (1)

Medicine & Me: Asthma (2004) meeting

Partnership facilitators James Lind AllianceClinician representatives British Thoracic SocietyPatient representatives Asthma UK

Aim:Identify the asthma research priorities shared by patients and clinicians.

Definition of ‘Treatment Uncertainty’:‘A main concern about the effects of asthma treatments that cannot be answered by referring to up-to-date systematic reviews of existing research evidence’

JLA Asthma Working Partnership (2)

Asthma UK’s objectivesTo consult with people with asthma and identify their treatment uncertainties.

How to engage and collect views? Form a working group of people with different

relationships to asthma and experiences to provide representation.

Identify the most appropriate way to consult with people with asthma across the UK.

Working group decision Develop a survey Target as wide an audience as possible

Staff (5) and Asthma representatives (7)

Mix of relationships to asthma People with asthma Parents and carers of people with asthma Asthma management expertise Scientific and policy research expertise

Mix of ages, backgrounds, severity of asthma & other conditions

Some volunteers are actively involved in Asthma UK’s work

Speak Up for Asthma Case studies Volunteers News stories Users & Carers Forum Asthma UK reports and publications

Some volunteers were newly recruited

Asthma UK working group profile

Ideation - Scoping and objective setting

Consultation - Survey design

Data analysis - Developing a taxonomy- Categorising responses

Application - Prioritising concerns about asthma

treatments identified in survey

Evaluation - Dissemination of results& Reporting

Key stages asthma representatives were involved in the partnership

Surveying people living with asthma about their treatment uncertainties

Survey development (1)

Asthma UK to survey a representative sample of people with asthma

Challenges and Solutions

Quantity 5.2 million people with asthma in the UK

Postal questionnaire and web survey

Location Reaching people living with asthma across the UK

Good geographical spread of members received the questionnaire

Diversity Asthma affects all ages, genders, ethnic groups & social

backgrounds Tailored web survey to increase reach to diverse groups Surveys also sent to targeted groups: Parents, Youth Forum, Speak Up for Asthma Volunteers

Survey development (2)

Format What is the most appropriate survey format?

Responses given in free text box Project explained in accompanying covering letter Clearly outlined the variety of asthma treatment types Considered bias in providing example questions Questionnaire refined by asthma working group and

INVOLVE

Language Choice of language? Explaining ‘treatment uncertainty’ in a survey? People talk about collective experiences not research

questions Concise, easy-to-read and jargon-free explanation Checked readability with asthma representatives & Youth

Forum In English, due to complexity of question, limited

time/resources

Postal surveys (February to April 2006) Mailed out = 1,146 Responses = 159

(14% response rate, expected = 10%) Relevant treatment uncertainty responses = 113

Web surveys (March to April 2006) Responses = 211 Relevant treatment uncertainty responses = 154

Total responses = 370 Total treatment uncertainty responses = 267

72% of surveys were ‘usable’

Survey responses

However, as each response had up to six questions, in real terms this amounted to assigning over 850 individual treatment uncertainty categories.

Categorisation of responses and

forming indicative questions

JLA representatives Mark Fenton, DUETs Editor Sally Crowe, Consultation & observation role

Asthma UK representatives Jenny Versnel Samantha Walker Ivor Cook

Clinical representative Colin Gelder, Asthma DUETs Editor

Categorisation working group

So… are you a ‘Lumper’

or a ‘Splitter’?

How to categorise

Lumpers:

‘reject differences and choose to emphasise similarities to create simple patterns. Any evidence that does not fit their arguments is ignored as aberrant.’

How to categorise

in contrast Splitters:

‘embrace and emphasise differences, and resist simple schemes and prefer more complex patterns.’

How to categorise

Lumping phases Reviewed responses individually then collectively to capture key

themes Identified key words and agreed common terms Key words were grouped under broad overarching categories

Splitting phases Reviewed individual responses Teased out ‘treatment uncertainty’ from dialogues

Developed taxonomy based on Cochrane Airways terms & common terms

Revised/adapted format similar to structure used in the UKCRC’s recent UK Health Research Analysis

Coding phase

Used revised taxonomy to assign categories to each identified uncertainty

Categorising the responses

Asthma taxonomy system had 12 overarching categories to reflect the broad treatment uncertainty areas.

Coding the responses (1)

What is a taxonomy? List of categories and the rules used to assign categories to each response

12 overarching categories

Categories that relate to the individual:

Stage of life Severity of illness Stage of illness

General categories:

Adverse effects Allergy Complementary

therapies Co-morbidity Drug therapies Drug delivery Management New therapies Triggers

Asthma taxonomy system had 12 overarching categories to reflect the broad treatment uncertainties.

Each overarching category had up to 2 further sub-categories to give more specific information about the uncertainty.For example:

‘Uncertainty about the adverse effects of drug therapies’ = Adverse effects – Drugs

‘Uncertainty about the effects of breathing exercises such as Buteyko’ = Complementary therapies – Physical therapy – Breathing

exercises

‘Uncertainty about the effects of complementary therapies’ = Complementary therapies – General

Coding the responses (2)

What is a Taxonomy? List of categories and the rules used to assign categories to each response

All responses were coded using any combination of categories that were relevant.For example:

‘My two year old daughter is on Seretide 125 and was previously on Flixotide and Serevent. I am aware that this is not normally prescribed to children so young.’ = Stage of life - Childhood (0-2) = Adverse effects - Out of licence use = Drug delivery - Inhaled = Drug therapies - Combination and additive therapies.

‘Could it be possibly that my daughter hasn't got asthma anymore?’ = Management – Diagnosis**Diagnosis and prognosis questions are not Treatment

uncertainties

Taxonomy development and categorisation took several months!

Coding the responses (3)

1. Calculated the number of times each category was assigned.

2. Category frequencies reported as a ‘% of all treatment uncertainties’.

3. Also looked at category combinations across the responses.

4. Rank categories and category combinations by frequency.

5. Highest ranked categories & combinations reformed into more user friendly questions.

6. Indicative question were cross-checked back to original underlying responses to ensure appropriateness and emphasis was not lost.

7. Asthma UK’s top 15 uncertainties were presented as indicative question at prioritisation meeting of patient and clinician representatives.

8. Discussed, re-ranked and top 10 shared treatment uncertainties selected.

Forming Indicative Questions (1)

For example:

Original response‘I do worry if the steroid inhaler could have any other damaging effects in the future’

Categories were assigned, then combinations were comparedHow many times was ‘Adverse effects - Drugs’ associated with ‘Drug therapies - Steroids’?

Say this = 30% and was selected as a top ranking uncertainty

Indicative question‘What are the adverse effects associated with long-term use of inhaled steroids?’

Forming Indicative Questions (2)

What are the top 10 shared priority

asthma treatment uncertainties?

1. Long-term adverse effects associated with mainstay asthma drug therapies in adults and children?

2. Managing asthma with other health problems?

3. Successful Self-management?

4. Education about managing adverse effects of drugs?

5. Managing asthma triggers?

6. Complementary therapies?

7. Benefits of breathing exercises?

8. Education about asthma control?

9. Manage consultations and asthma control in adolescence?

10.Psychological interventions?

Top 10 asthma treatment uncertainties to be answered with future research

Full report on prioritisation exercisewww.lindalliance.org/research priorities in asthma

Top 10 asthma treatment uncertainties to be unanswered with future research

Evaluation of our experiences of the working

partnership

My background

Ongoing involvement in Asthma UK’s work ‘Speak up for Asthma’ volunteer Involvement in projects such as Medicine and Me: Asthma

research

Developed greater understanding of variety of uncertainties about asthma and asthma treatments

Highlights and challenges

Methodical approach Lifting out the actual treatment concerns questions from the

responses Categorising responses and developing the taxonomy Reaching a shared understanding

My experience as an Asthma representative (1)

My experience as an Asthma representative (2)

Importance of providing support

Communications Email Meetings

Teleconference Face to Face (eg formal meetings) Progress updates Planned well in advance (preparation and reflection)

Use clear and jargon-free language Staff contact for queries and informal chats

Materials Briefing documents Glossary of clinical & technical terms Medicines and treatments guide

Achievements Taxonomy development was an important factor that enabled

the project to become such a success and this took a great deal of time and hard work.

With the advantage of a well-designed taxonomy, slotting in the treatment uncertainties against the responses became much easier.

All the hard work paid off at the final prioritisation meeting.

While this was a challenging project, it was a great success not only for the JLA Asthma Working Partners and most importantly should how people with asthma really can make an impact.

My experience as an Asthma representative (3)

General feedback comments

‘Very well organised and facilitated by the JLA’

‘Good mixture of views and all were able to participate.’

‘… interesting to see how group dynamics changed the priorities, and … were influenced by open discussion with lay and professionals.’

‘a worthwhile experience’

‘Successful outcome’.

1) Prepare for many ‘head-scratching’ moments

Difficult to grasp the concept of a treatment uncertainty

Responses were often not questions

Difficult to code without bias

Ignore dialogue and focus on ‘research question’

Key words and terms Careful & objective consideration Interpretation by patients vs clinicians Give explanations, limitations and assumptions for consistent

coding

Broad categories to assign themes

Narrow down using sub-categories to inform the type of research

Asthma UK’s overall findings

Asthma UK’s overall findings (2)

2) Be realistic about the resources required

Human resources, research, preparation, meetings, mailings, analysis, skills & training, communication, IT support…

3) Flexibility …always leave room for the unexpected!

We identified a need to respond to people who requested feedback on urgent clinical questions about their asthma management given in their responses. Our asthma nurse specialists answered around 40 requests for feedback (1 in 10 of responses received).

4) Three-way commitment and input from all partners is key

5) Finally…doing it properly takes months if not years!!!

Post-prioritisation workFormulate vignettes for priority questions to present to research funding bodies.

News article Society Guardian ‘Turning the tables’, May 2007

Sophie Petit-Zeman, AMRC

Journal publication (in progress)

Findings will inform future JLA Partnerships and Asthma UK’s own work

Inform upcoming revision to Asthma UK’s Clinical Asthma Research Strategy in conjunction with BTS-SIGN guideline review.

…unlimited potential!

Where next?

Our thanks to…

Asthma UK Staff

Project lead Jenny Versnel, Executive Director of Research & Policy

Data management & Working group co-ordinator Samantha Walker, Research Liaison Officer

Clinical advisorDot Russell, Asthma Nurse Specialist (Asthma UK Adviceline)

Support roleLeanne Male, Assistant Director, ResearchJosianne Roma-Reardon, former Policy & Information ManagerPatrick Ladbury, former Children & Young People’s Development Manager

Asthma UK Working Group (1)

Asthma Representatives (7 Asthma UK volunteers)

Ivor Cook Karen Bowler Jackie Fielding Liz Johnson

Asthma UK Working Group (2)

Additional Support Asthma UK Youth Forum (12-17 years old)

Daksha Kamdar Amanda Cook Loraine Hili

James Lind Alliance Secretariat Ian Chalmers Lester Firkins Sally Crowe Mark Fenton, DUETS Patricia Atkinson

British Thoracic Society Bernard Higgins Sheila Edwards Stephen Holgate Colin Gelder Aziz Sheikh

Asthma Working Partners

asthma.org.uk