Characterising burden of treatment in cystic fibrosis to identify priority areas for clinical trials
Characterising burden of treatment in cystic fibrosis to identify priority areas for clinical trials
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DOI：
10.1016/j.jcf.2019.10.025
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发表时间：
2020-05-01
影响因子：
5.2
通讯作者：
Smyth, Alan R.
中科院分区：
文献类型：
--
作者：
Davies, Gwyneth;Rowbotham, Nicola J.;Smyth, Alan R.
在最近的James Lind联盟在囊性纤维化(CF)中的优先设置伙伴关系中，首要的临床研究问题是：“有什么有效的方法可以简化囊性纤维化患者的治疗负担？”我们的目的是总结治疗负担的生活经验，并提出旨在减少治疗负担的研究主题。共同制作了一份在线调查问卷，并对答复进行了定量和专题分析。共收到941份调查答复(其中641份来自非专业社区)。患有CF的患者报告当前治疗的中位数为10(四分位数范围：6-15)。确定了与简化治疗负担有关的七个主要主题。治疗负担很高，超出了进行日常治疗所需的时间，影响因人而异。沟通、支持、评估当前治疗方法、服务设置和治疗后勤(获得/管理)的方法有助于负担，为临床试验或服务改进提供评估空间。(C)2019年欧洲囊性纤维化学会。爱思唯尔出版，版权所有。
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.