Title: asthma.org.uk
1asthma.org.uk
2Identifying the treatment uncertainties for
people living with asthma
- Dr Samantha Walker, Research Liaison Officer
- 17 September 2007
3Overview
- 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
4- Should we involve
- people with asthma in research?
YES!
5Our 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.
6Research, 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.
7Involving people living with asthma in research
8How 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)
9JLA 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
10JLA 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
11Asthma 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
12Key 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
13Surveying people living with asthma about their
treatment uncertainties
14Survey 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
15Survey 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
16Survey 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.
17Categorisation of responses and forming
indicative questions
18Categorisation 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
19How to categorise
- So are you
- a Lumper
- or a Splitter?
20How 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.
21How to categorise
- in contrast Splitters
- embrace and emphasise
- differences, and resist simple
- schemes and prefer
- more complex patterns.
22Categorising 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
23Coding 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.
2412 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
25Coding 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
26Coding 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!
27Forming 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.
28Forming 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?
29What are the top 10 shared priority asthma
treatment uncertainties?
30Top 10 asthma treatment uncertainties to be
answered with future research
- Long-term adverse effects associated with
mainstay asthma drug therapies in adults and
children? - Managing asthma with other health problems?
- Successful Self-management?
- Education about managing adverse effects of
drugs? - Managing asthma triggers?
- Complementary therapies?
- Benefits of breathing exercises?
- Education about asthma control?
- Manage consultations and asthma control in
adolescence? - Psychological interventions?
31Top 10 asthma treatment uncertainties to be
unanswered with future research
-
- Full report on prioritisation exercise
- www.lindalliance.org/research priorities in
asthma
32Evaluation of our experiences of the working
partnership
33My 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
34My 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
35My 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.
36General 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.
37Asthma 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
38Asthma 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!!!
39Where 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!
40Our thanks to
41Asthma 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
42Asthma 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)
43Asthma 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
44asthma.org.uk