asthma.org.uk

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asthma.org.uk
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Identifying the treatment uncertainties for
people living with asthma

• Dr Samantha Walker, Research Liaison Officer
• 17 September 2007

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Overview

• 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

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• Should we involve
• people with asthma in research?

YES!
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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.

• 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.

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Research, Policy Services objectives

• 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.

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Involving people living with asthma in research
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How is Asthma UKs work informed by the opinions
of people with asthma?

• 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)

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JLA Asthma Working Partnership (1)

• Medicine Me Asthma (2004) meeting
• Partnership facilitators James Lind Alliance
• Clinician representatives British Thoracic
  Society
• Patient 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

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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

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Asthma UK working group profile

• 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

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Key stages asthma representatives were involved
in the partnership

• 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

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Surveying people living with asthma about their
treatment uncertainties
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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

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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

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Survey responses

• 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

However, as each response had up to six
questions, in real terms this amounted to
assigning over 850 individual treatment
uncertainty categories.
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Categorisation of responses and forming
indicative questions
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Categorisation working group

• 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

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How to categorise

• So are you
• a Lumper
• or a Splitter?

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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.

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How to categorise

• in contrast Splitters
• embrace and emphasise
• differences, and resist simple
• schemes and prefer
• more complex patterns.

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Categorising the responses

• 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

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Coding the responses (1)
What is a taxonomy? List of categories and the
rules used to assign categories to each response

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

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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

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Coding the responses (2)
What is a Taxonomy? List of categories and the
rules used to assign categories to each response

• 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

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Coding the responses (3)

• 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!

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Forming Indicative Questions (1)

• Calculated the number of times each category was
  assigned.
• Category frequencies reported as a of all
  treatment uncertainties.
• Also looked at category combinations across the
  responses.
• Rank categories and category combinations by
  frequency.
• Highest ranked categories combinations reformed
  into more
• user friendly questions.
• Indicative question were cross-checked back to
  original underlying responses to ensure
  appropriateness and emphasis was not lost.
• Asthma UKs top 15 uncertainties were presented
  as indicative question
• at prioritisation meeting of patient and
  clinician representatives.
• Discussed, re-ranked and top 10 shared treatment
  uncertainties selected.

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Forming Indicative Questions (2)

• 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?

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What are the top 10 shared priority asthma
treatment uncertainties?
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Top 10 asthma treatment uncertainties to be
answered with future research

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?

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Top 10 asthma treatment uncertainties to be
unanswered with future research

• Full report on prioritisation exercise
• www.lindalliance.org/research priorities in
  asthma

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Evaluation of our experiences of the working
partnership
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My experience as an Asthma representative (1)

• 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

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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

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My experience as an Asthma representative (3)

• 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.

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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.

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Asthma UKs overall findings

• 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

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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!!!
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Where next?

• 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!

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Our thanks to
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Asthma UK Working Group (1)

• 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

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Asthma UK Working Group (2)

• Asthma Representatives
• (7 Asthma UK volunteers)
• Ivor Cook
• Karen Bowler
• Jackie Fielding
• Liz Johnson

• Daksha Kamdar
• Amanda Cook
• Loraine Hili

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

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Asthma Working Partners

• 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

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asthma.org.uk