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Characterising burden of treatment in cystic fibrosis to identify priority areas for clinical trials

Davies, G; Rowbotham, NJ; Smith, S; Elliot, ZC; Gathercole, K; Rayner, O; Leighton, PA; ... Smyth, AR; + view all (2020) Characterising burden of treatment in cystic fibrosis to identify priority areas for clinical trials. Journal of Cystic Fibrosis , 19 (3) pp. 499-502. 10.1016/j.jcf.2019.10.025. Green open access

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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.

Type: Article
Title: Characterising burden of treatment in cystic fibrosis to identify priority areas for clinical trials
Location: Netherlands
Open access status: An open access version is available from UCL Discovery
DOI: 10.1016/j.jcf.2019.10.025
Publisher version: https://doi.org/10.1016/j.jcf.2019.10.025
Language: English
Additional information: This version is the author accepted manuscript. For information on re-use, please refer to the publisher’s terms and conditions.
Keywords: Clinical trial, Co-production, Cystic fibrosis, Priority setting, Treatment burden
UCL classification: UCL
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > UCL GOS Institute of Child Health
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > UCL GOS Institute of Child Health > Population, Policy and Practice Dept
URI: https://discovery.ucl.ac.uk/id/eprint/10087460
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