Characterising burden of treatment in cystic fibrosis to identify priority areas for clinical trials.
Davies, Gwyneth Rowbotham, Nicola J Smith, Sherie Elliot, Zoe C Gathercole, Katie Rayner, Oli Leighton, Paul A Herbert, Sophie Duff, Alistair Ja Chandran, Suja
Davies, Gwyneth
Rowbotham, Nicola J
Smith, Sherie
Elliot, Zoe C
Gathercole, Katie
Rayner, Oli
Leighton, Paul A
Herbert, Sophie
Duff, Alistair Ja
Chandran, Suja
Abstract
In a recent James Lind Alliance Priority Setting Partnership in cystic fibrosis (CF) the top priority clinical research question was: "What are effective ways of simplifying the treatment burden of people with CF?" We aimed to summarise the lived experience of treatment burden and suggest research themes aimed at reducing it. An online questionnaire was co-produced and responses subjected to quantitative and thematic analysis. 941 survey responses were received (641 from lay community). People with CF reported a median of 10 (interquartile range: 6-15) current treatments. Seven main themes relating to simplifying treatment burden were identified. Treatment burden is high, extending beyond time taken to perform routine daily treatments, with impact varying according to person-specific factors. Approaches to communication, support, evaluation of current treatments, service set-up, and treatment logistics (obtaining/administration) contribute to burden, offering scope for evaluation in clinical trials or service improvement.
MIDER Authors
Affiliations
UCL Great Ormond Street Institute of Child Health; University of Nottingham; University of Leeds; Leeds Teaching Hospitals NHS Trust; Kings College Hospital NHS Foundation Trust; York Teaching Hospital NHS Foundation Trust; University Hospitals Birmingham NHS Foundation Trust
Date
2019-11-15
Type
Article
Collections
Citation
Davies G, Rowbotham NJ, Smith S, Elliot ZC, Gathercole K, Rayner O, Leighton PA, Herbert S, Duff AJ, Chandran S, Daniels T, Nash EF, Smyth AR. Characterising burden of treatment in cystic fibrosis to identify priority areas for clinical trials. J Cyst Fibros. 2020 May;19(3):499-502. doi: 10.1016/j.jcf.2019.10.025. Epub 2019 Nov 15.