| Literature DB >> 31735561 |
Gwyneth Davies1, Nicola J Rowbotham2, Sherie Smith2, Zoe C Elliot3, Katie Gathercole4, Oli Rayner5, Paul A Leighton6, Sophie Herbert2, Alistair Ja Duff7, Suja Chandran8, Tracey Daniels9, Edward F Nash10, Alan R Smyth2.
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.Entities:
Keywords: Clinical trial; Co-production; Cystic fibrosis; Priority setting; Treatment burden
Year: 2019 PMID： 31735561 DOI： 10.1016/j.jcf.2019.10.025
Source DB: PubMed Journal: J Cyst Fibros ISSN： 1569-1993 Impact factor: 5.482