Davies, G, Rowbotham, NJ, Smith, S et al. (10 more authors) (2020) Characterising burden of treatment in cystic fibrosis to identify priority areas for clinical trials. Journal of Cystic Fibrosis, 19 (3). pp. 499-502. ISSN 1569-1993
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.
Metadata
Item Type: | Article |
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Authors/Creators: |
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Copyright, Publisher and Additional Information: | © 2019 European Cystic Fibrosis Society. Published by Elsevier B.V. All rights reserved.This is an author produced version of an article published in Journal of Cystic Fibrosis. Uploaded in accordance with the publisher's self-archiving policy. |
Keywords: | Treatment burden; Cystic fibrosis; Clinical trial; Co-production; Priority setting |
Dates: |
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Institution: | The University of Leeds |
Academic Units: | The University of Leeds > Faculty of Education, Social Sciences and Law (Leeds) > School of Education (Leeds) |
Depositing User: | Symplectic Publications |
Date Deposited: | 04 Nov 2019 10:40 |
Last Modified: | 15 Nov 2020 01:38 |
Status: | Published |
Publisher: | Elsevier |
Identification Number: | 10.1016/j.jcf.2019.10.025 |
Open Archives Initiative ID (OAI ID): | oai:eprints.whiterose.ac.uk:153005 |
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