Characterising burden of treatment in cystic fibrosis to identify priority areas for clinical trials.
Clinical trial
Co-production
Cystic fibrosis
Priority setting
Treatment burden
Journal
Journal of cystic fibrosis : official journal of the European Cystic Fibrosis Society
ISSN: 1873-5010
Titre abrégé: J Cyst Fibros
Pays: Netherlands
ID NLM: 101128966
Informations de publication
Date de publication:
05 2020
05 2020
Historique:
received:
11
07
2019
revised:
26
10
2019
accepted:
29
10
2019
pubmed:
19
11
2019
medline:
14
9
2021
entrez:
19
11
2019
Statut:
ppublish
Résumé
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.
Identifiants
pubmed: 31735561
pii: S1569-1993(19)30961-0
doi: 10.1016/j.jcf.2019.10.025
pii:
doi:
Types de publication
Journal Article
Research Support, Non-U.S. Gov't
Langues
eng
Sous-ensembles de citation
IM
Pagination
499-502Subventions
Organisme : Medical Research Council
ID : MR/L023784/1
Pays : United Kingdom
Organisme : Department of Health
Pays : United Kingdom
Informations de copyright
Copyright © 2019 European Cystic Fibrosis Society. Published by Elsevier B.V. All rights reserved.
Déclaration de conflit d'intérêts
Declaration of Competing Interest A Duff reports personal fees and non-financial support from Chiesi pharmaceuticals, personal fees from Novartis pharmaceuticals, outside the submitted work. A Smyth reports grants from Vertex, personal fees from Vertex and support for educational meetings from Teva, outside the submitted work; In addition, A Smyth has a patent ‘Alkyl quinolones as biomarkers of Pseudomonas aeruginosa infection and uses thereof’ issued. N Rowbotham reports non-financial support from Teva, outside the submitted work. T Daniels reports personal fees from Profile pharma, personal fees from Gilead, personal fees from Chiesi, other from Teva, personal fees from Vertex, outside the submitted work. All other authors have no other conflict of interest to declare.