On #WorldAsthmaDay, Emma Dennett from Cochrane Airways blogs about a workshop held to explore what matters to people with asthma, what asthma control means to them, and to identify topics for Cochrane Reviews.
My hunch was that all you had to do was talk to people over a cuppa and you’d find out useful information. But the day job of supporting and managing the production of 25 Cochrane Reviews/updates per year doesn’t leave much time for these sorts of interactions so we applied for and received some money to run a workshop for people with asthma and their carers.
Our aim was to identify ten topics that were important to people with asthma that would be the focus for new Cochrane Reviews. We would produce these reviews over the next three years. This was in 2014, so why am I talking about it now? Because despite those reviews being completed a year ago, to my shame, we haven’t done anything to publicise it. This is despite being very pleased, grateful and satisfied with what happened in the workshop!
Asthma control: “To do what I want – everything I want to do”
– workshop participant on what asthma control means to them.
On a surprisingly hot October day in 2014, 18 people met at Friends House in London. These included mostly people with asthma, from teenagers to people in their later years, and two parents of the teenagers. They had different experiences of living with asthma – ranging from severe asthma to longstanding asthma to asthma co-existing with COPD. We also had a GP, practice nurse, an asthma clinic nurse, respiratory physiologist and a children’s respiratory specialist. We recruited these people through Asthma UK and an online invitation, and through contacts.
People at the workshop told us about what control meant to them. This included being able to go on holiday. Reduce exacerbations so they don’t need to take oral steroids, which can affect mood so badly that a counsellor said she was unable to work whilst taking them. Being able to get a new inhaler straight away once they lost it and not having to get a GP appointment first.
“We need to know what works for us and not just what the professional says might work.”
Armed with stickers and post-its, our participants bravely set about identifying questions they wanted answers to.
We ranked those questions during the workshop and after some further consideration in the office the following week, we arrived at ten review titles. We completed nine reviews on eight of the topics. Two we didn’t complete due to lack of trials – highlighting an important evidence gap.
- Educating school staff about how to respond to an asthma attack and awareness of asthma (Kew 2017a)
- Lay-led and peer support interventions for teenagers and adults with asthma (Kew 2017b)
- Personalised asthma plans for people with asthma (Gatherall 2017)
- Stepping down courses of inhaled steroids for people with asthma (Crossingham 2107)
- Shared decision-making for people with asthma (Kew 2017c)
- High dose versus low dose oral steroids for asthma attacks (Normansell 2106)
- Pulse oximeters at home for people with asthma (Welsh 2015)
- Cognitive behavioural therapy (CBT) for teenagers and adults with asthma (Kew 2016)
- Fast-track asthma services for people with asthma (no trials found)
- Relaxation therapy & other coping strategies for use during an asthma attack (no trials found)
- Asthma education for school staff increases asthma knowledge and preparedness in the schools, but we do not know much about how this affects children’s asthma.
- Schools that received asthma education were more likely to stick to to asthma policies and staff were better prepared.
- Adolescents who received peer support may have better quality of life than those who didn’t but we cannot be certain.
- Controversially, our review of personalised asthma action plans couldn’t show whether they were helpful, however having a personalised asthma action plan is considered to be essential for people to have, so this review highlights that reviews can diverge from people’s lived experience.
- Studies about shared decision making for people with asthma were so different that we couldn’t draw conclusions. However we saw from individual studies that there did seem to be some benefits on asthma control and some other measures.
- It is not clear whether longer or higher-doses of oral steroids are more effective than shorter or lower-dose regimens for treating asthma flare ups, or whether they are associated with more unwanted side effects.
- We were unable to say confidently whether lower daily doses of inhaled steroids were safer or as effective as standard doses, though we didn’t find any differences. This is because there were too few, small studies and studies didn’t always report clearly what they did.
- Although we found no studies using a pulse oximeter as part of a personalised asthma action plan, we still wanted to do this review. We are worried that pulse oximeters are being sold online and on the high street as a “medical cabinet essential”, despite there being no evidence that it is a safe way to make a treatment decision about asthma. People should not use a pulse oximeter to make treatment decisions without seeking the advice of a qualified healthcare professional.
- Cognitive behavioural therapy (CBT) may improve the quality of life and asthma control of adults with asthma, but there is limited evidence for other important outcomes, and our confidence in the results is quite low. None of the studies included adolescents with asthma.
What else did we learn?
We felt we couldn’t tackle some of the more complex review questions raised at the workshop – such as looking at overall delivery of healthcare. However, four years later we have more confidence and have gained the skills in order to start to tackle questions such as this. This is partly because we have a new Co-ordinating Editor who is interested in using trials with designs other than randomised controlled trials (such as qualitative studies). Also, the NIHR has funded a complex reviews support unit who assist us in defining useful questions and can also provide help with more complex statistics.
Because of this workshop and a number of other organisational changes in Cochrane and our mind-set, we have taken more control at Airways. We have joined a patient research group at our local institution. They have told us about what it’s like for them to live with a different breathing condition, COPD. They commented on our plans and shaped them. From this we developed some review titles and got funding for another programme grant. Because the patient group is made up of local people we can have several meetings a year which means their involvement and their influence on the reviews will be much greater. We keep patients in mind more when making decisions about what reviews to commission and when we should stop putting resources into reviews that are not working.
In our new programme grant we are going to actively share our work more widely and more quickly!
Emma Dennett reports a programme grant from NIHR, this was paid to St George’s University of London to allow Cochrane Airways Group to conduct the workshop and complete 24 Cochrane Reviews. I am the managing editor of the Cochrane Airways Group.
References may be found here.