1. asthma.org.uk

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

3. 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

4. Should we involve people with asthma in research? YES!

5. 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.

6. 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

7. Involving people living with asthma in research

8. 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 UKs work informed by the opinions of people with asthma?

9. JLA Asthma Working Partnership (1) Medicine & Me: Asthma (2004) meeting Partnership facilitatorsJames Lind Alliance Clinician representativesBritish Thoracic Society Patient representativesAsthma 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

10. JLA Asthma Working Partnership (2) Asthma UKs objectives To 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

11. 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 UKs 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

12. 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

13. Surveying people living with asthma about their treatment uncertainties

14. 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

15. 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

16. 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.

17. Categorisation of responses and forming indicative questions

18. 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

19. So… are you a Lumper or a Splitter? How to categorise

20. 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

21. in contrast Splitters: embrace and emphasise differences, and resist simple schemes and prefer more complex patterns. How to categorise

22. 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 UKCRCs recent UK Health Research Analysis Coding phase Used revised taxonomy to assign categories to each identified uncertainty Categorising the responses

23. 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

24. 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

25. 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

26. 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)

27. 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 UKs 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)

28. 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 compared How 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)

29. What are the top 10 shared priority asthma treatment uncertainties?

30. 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

31. Full report on prioritisation exercise www.lindalliance.org/research priorities in asthma Top 10 asthma treatment uncertainties to be unanswered with future research

32. Evaluation of our experiences of the working partnership

33. My background Ongoing involvement in Asthma UKs 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)

34. 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

35. 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)

36. 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.

37. 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 UKs overall findings

38. Asthma UKs 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!!!

39. Post-prioritisation work Formulate 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 UKs own work Inform upcoming revision to Asthma UKs Clinical Asthma Research Strategy in conjunction with BTS-SIGN guideline review. …unlimited potential! Where next?

40. Our thanks to…

41. Asthma UK Staff Project lead Jenny Versnel, Executive Director of Research & Policy Data management & Working group co-ordinator Samantha Walker, Research Liaison Officer Clinical advisor Dot Russell, Asthma Nurse Specialist (Asthma UK Adviceline) Support role Leanne Male, Assistant Director, Research Josianne Roma-Reardon, former Policy & Information Manager Patrick Ladbury, former Children & Young Peoples Development Manager Asthma UK Working Group (1)

42. 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

43. 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

44. asthma.org.uk