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

被引：60

作者：

Davies, Gwyneth ^{[1
]}

Rowbotham, Nicola J. ^{[2
]}

Smith, Sherie ^{[2
]}

Elliot, Zoe C. ^{[3
]}

Gathercole, Katie ^{[4
,5
]}

Rayner, Oli ^{[6
]}

Leighton, Paul A. ^{[7
]}

Herbert, Sophie ^{[2
]}

Duff, Alistair J. A. ^{[8
]}

Chandran, Suja ^{[9
]}

Daniels, Tracey ^{[10
]}

Nash, Edward F. ^{[11
]}

Smyth, Alan R. ^{[2
]}

机构：

[1] UCL Great Ormond St Inst Child Hlth, Resp Crit Care & Anaesthesia Sect, London, England

[2] Univ Nottingham, Evidence Based Child Hlth Grp, Nottingham, England

[3] Parent Children CF, Nottingham, England

[4] Univ Leeds, Leeds, W Yorkshire, England

[5] Person CF, Leeds, W Yorkshire, England

[6] Person CF, Plymouth, Devon, England

[7] Univ Nottingham, Ctr Evidence Based Dermatol, Nottingham, England

[8] Leeds Teaching Hosp NHS Trust, Leeds, W Yorkshire, England

[9] Kings Coll Hosp NHS Fdn Trust, Paediat CF Serv, London, England

[10] York Teaching Hosp NHS Fdn Trust, Dept Physiotherapy, York Hull Adult CF Unit, York, N Yorkshire, England

[11] Univ Hosp Birmingham NHS Fdn Trust, West Midlands Adult CF Ctr, Birmingham, W Midlands, England

来源：

JOURNAL OF CYSTIC FIBROSIS | 2020年 / 19卷 / 03期

关键词：

Treatment burden; Cystic fibrosis; Clinical trial; Co-production; Priority setting; ADHERENCE;

D O I：

10.1016/j.jcf.2019.10.025

中图分类号：

R56 [呼吸系及胸部疾病];

学科分类号：

摘要：

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. (C) 2019 European Cystic Fibrosis Society. Published by Elsevier B.V. All rights reserved.

引用

页码：499 / 502

页数：4

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