Survey indicated that core outcome set development is increasingly including patients, being conducted internationally and using Delphi surveys.

Survey indicated that core outcome set development is increasingly including patients, being conducted internationally and using Delphi surveys.
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DOI:
10.1186/s13063-018-2493-y
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发表时间:
2018-02-17
期刊:
影响因子:
2.5
通讯作者:
Williamson PR
Williamson PR
中科院分区:
医学4区
文献类型:
--
作者:
Biggane AM;Brading L;Ravaud P;Young B;Williamson PR

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将患者纳入核心结局集(COS)研究存在许多挑战,这些挑战可能因患者群体而异。这项研究描述了目前的努力,包括患者在COS的发展,目的是确定进一步改善和研究的领域。使用COMET数据库,2013年1月1日至2017年2月2日期间注册或发表的COS项目的通讯作者通过个性化电子邮件被邀请参加简短的在线调查。调查和电子邮件的构建,以最大限度地提高响应率,通过以下学术文献,以提高调查的响应。向无应答者发送个性化提醒电子邮件。这项调查探讨了COS研究中患者输入的频率,参与者,使用的方法以及COS开发是否是国际性的。192名COS开发人员接受了调查。从2017年2月21日至2017年5月7日收集了回复。146名独立开发人员做出了回应,得到了76%的回应率和与195个独立COS相关的数据(因为一些开发人员曾在多个COS上工作)。这里的重点是他们对162个已发布、已完成或正在开发阶段的COS的答复。87%(141/162)的已发表的已完成或正在进行的COS和超过94%(65/69)的正在进行的COS项目表明纳入了患者参与者。近一半(65/135)的COS包括来自两个或更多国家的患者参与者,22%(30/135)包括来自五个或更多国家的患者参与者。据报告,在85%(119/140)的项目中,德尔菲调查被单独使用或与其他方法结合使用。近四分之一(16/65)的正在进行的研究报告使用定性访谈,德尔菲调查和共识会议的组合。这些结果表明,德尔菲调查是最流行的方法,促进病人参与,而定性访谈,德尔菲调查和共识会议的组合是最流行的方法组合。令人鼓舞的是,越来越多的患者参与了COS的开发,一些开发人员正在采用的COS开发的国际方法也是如此。本文的在线版本(10.1186/s13063-018-2493-y)包含补充材料,可供授权用户使用。
There are numerous challenges in including patients in a core outcome set (COS) study, these can vary depending on the patient group. This study describes current efforts to include patients in the development of COS, with the aim of identifying areas for further improvement and study. Using the COMET database, corresponding authors of COS projects registered or published from 1 January 2013 to 2 February 2017 were invited via a personalised email to participate in a short online survey. The survey and emails were constructed to maximise the response rate by following the academic literature on enhancing survey responses. Personalised reminder emails were sent to non-responders. This survey explored the frequency of patient input in COS studies, who was involved, what methods were used and whether or not the COS development was international. One hundred and ninety-two COS developers were sent the survey. Responses were collected from 21 February 2017 until 7 May 2017. One hundred and forty-six unique developers responded, yielding a 76% response rate and data in relation to 195 unique COSs (as some developers had worked on multiple COSs). Of focus here are their responses regarding 162 COSs at the published, completed or ongoing stages of development. Inclusion of patient participants was indicated in 87% (141/162) of COSs in the published completed or ongoing stages and over 94% (65/69) of ongoing COS projects. Nearly half (65/135) of COSs included patient participants from two or more countries and 22% (30/135) included patient participants from five or more countries. The Delphi survey was reported as being used singularly or in combination with other methods in 85% (119/140) of projects. Almost a quarter (16/65) of ongoing studies reported using a combination of qualitative interviews, Delphi survey and consensus meeting. These findings indicated that the Delphi survey is the most popular method of facilitating patient participation, while the combination of qualitative interviews, Delphi survey and consensus meetings is the most popular combination of methods. The increased inclusion of patient participants in the development of COSs is encouraging, as is the international approach to COS development that some developers are adopting. The online version of this article (10.1186/s13063-018-2493-y) contains supplementary material, which is available to authorized users.
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发表时间: 2014
期刊: PloS one
影响因子: 3.7
作者:
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期刊: LANCET
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