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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; Daniels, Tracey; Nash, Edward F; Smyth, Alan R


Gwyneth Davies

Nicola J Rowbotham

Cochrane Systematic Reviewer

Zoe C Elliot

Katie Gathercole

Oli Rayner

Associate Professor of Applied Health Services Research

Sophie Herbert

Alistair Ja Duff

Suja Chandran

Tracey Daniels

Edward F Nash

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Professor of Child Health


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.


Davies, G., Rowbotham, N. J., Smith, S., Elliot, Z. C., Gathercole, K., Rayner, O., …Smyth, A. R. (2020). Characterising burden of treatment in cystic fibrosis to identify priority areas for clinical trials. Journal of Cystic Fibrosis, 19(3), 499-502.

Journal Article Type Article
Acceptance Date Oct 29, 2019
Online Publication Date Nov 14, 2019
Publication Date 2020-05
Deposit Date Nov 5, 2019
Publicly Available Date Nov 15, 2020
Journal Journal of Cystic Fibrosis
Print ISSN 1569-1993
Electronic ISSN 1873-5010
Publisher Elsevier
Peer Reviewed Peer Reviewed
Volume 19
Issue 3
Pages 499-502
Keywords Treatment burden; cystic fibrosis; clinical trial; co-production; priority setting
Public URL
Publisher URL


Davies_TreatmentBurden_OLS_Supplementaryfile1_Fullsurvey_withLog (485 Kb)

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