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

Davies, Gwyneth and Rowbotham, Nicola J and Smith, Sherie and Elliot, Zoe C and Gathercole, Katie and Rayner, Oli and Leighton, Paul A and Herbert, Sophie and Duff, Alistair Ja and Chandran, Suja and Daniels, Tracey and Nash, Edward F and Smyth, Alan R (2019) Characterising burden of treatment in cystic fibrosis to identify priority areas for clinical trials. Journal of cystic fibrosis : official journal of the European Cystic Fibrosis Society. ISSN 1873-5010. This article is available to all UHB staff and students via ASK Discovery tool http://tinyurl.com/z795c8c by using their UHB Athens login IDs

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Official URL: https://www.cysticfibrosisjournal.com/article/S156...

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.

Item Type: Article
Additional Information: This article is available to all UHB staff and students via ASK Discovery tool http://tinyurl.com/z795c8c by using their UHB Athens login IDs
Subjects: WF Respiratory system. Respiratory medicine
Divisions: Planned IP Care > Respiratory Medicine
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Depositing User: Mr Philip O'Reilly
Date Deposited: 27 Nov 2019 09:53
Last Modified: 27 Nov 2019 09:53
URI: http://www.repository.uhblibrary.co.uk/id/eprint/2627

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