I’ve worked with people with cystic fibrosis for about the last 16 years, and one of my main areas of interest is inhaled and nebulised treatments and how well people manage to take these treatments as prescribed.
I’m really pleased to have been asked to be on the steering committee for this priority setting partnership so that I can represent the views of physiotherapists who work with people with CF and their families.
This is a really important project that will give a voice to people with CF, their families and clinicians, who are best placed to understand what the key problems are that we need to answer through research. I'm hoping that we will be able to highlight areas of treatment and particularly the practicalities of treatment that are poorly understood and inspire funders and researchers to focus on these gaps.
On a personal level, physiotherapy can be a frustrating area to work in, encompassing the two most unpopular treatments; airway clearance and nebulisation. Physiotherapy is a vital part of helping people with cystic fibrosis stay as healthy as possible, and yet there appear to be so many gaps in what we know.
When should you start airway clearance? Which airway clearance technique is best? How long should you do it for? How many days? What's the minimum someone can 'get away with' and still benefit? At what stage of illness should you consider changing it? Which nebulised medication is more likely to be taken/done if someone's struggling? Through which device?
And these are just the ones that spring to mind for me – I'm hoping that we may begin to understand where the real gaps in knowledge are and which are important to focus research on.
The James Lind Alliance Priority Setting Partnership is part-funded by the Cystic Fibrosis Trust. Get involved and take the online survey now.