The values and outcomes most important to patients with cystic fibrosis (CF) and their families will take centre stage in a new research study funded by the National Institute for Health Research (NIHR) through the Research for Patient Benefit Programme (RfPB).
‘Reducing treatment burden’ was chosen as the number one priority for patients with CF, their families and health professionals, according to a recent survey carried out by the James Lind Alliance.
CF is a genetic condition that affects more than 10,000 people in the UK. It causes mucus to accumulate in the lungs, gut and other organs. This results in poor lung function and requires time-consuming daily treatments for patients with the condition.
Sudden worsening in health (known as exacerbations), often due to chest infections, can sometimes require hospitalisation which can interfere with work and school, reducing quality-of-life.
Which is why this study will look at patient centred outcomes relating to treatment burden and quality of life, with the aim of helping what future treatments are funded.
Dr Siobhan Carr (pictured) paediatric respiratory consultant at the Trust, is co-lead for the study together with Professor Jennifer Whitty from the University of East Anglia. Dr Nicholas Simmonds, another respiratory consultant at the Trust, is also part of the research group.
The project will also see support from the National Institute for Health Excellence (NICE) who are, amongst other things, responsible for publishing guidance on appropriate treatment and care of people with specific diseases and conditions.
Dr Carr stated that she “is excited to have NICE engaging with this project” and hopes the study will “encourage the NHS to focus on delivering the treatments most important to patients with CF.”
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