Feedback of trial results to participants: a survey of clinicians' and patients' attitudes and experiences.

Feedback of trial results to participants: a survey of clinicians' and patients' attitudes and experiences.
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DOI:
10.1016/j.ejon.2010.06.009
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发表时间:
2011-04
影响因子:
2.8
通讯作者:
Elkan, Ruth
Elkan, Ruth
中科院分区:
医学2区
文献类型:
--
作者:
Cox, Karen;Moghaddam, Nima;Bird, Lydia;Elkan, Ruth

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人们对向试验参与者提供试验结果越来越感兴趣。然而,在临床试验结束和向参与者反馈结果方面,研究基础存在许多差距。本研究的目的是探索向试验参与者反馈试验结果的实践,并确定该领域的最佳实践。邮寄调查问卷被发送给英国国家癌症研究所临床研究小组 (NCRI CSG) 的成员以及在 16 个月期间(4 月 7 日至 7 月 8 日)完成试验治疗(位于一个癌症网络)的 18 岁以上患者。返回 145 份 NCRI CSG 成员调查和 81 份患者问卷。绝大多数受访者支持向试验参与者提供结果的想法。然而,NCRI 成员和试验参与者对于提供结果的时间和方法存在不同意见。结果提供了对这些群体对结果的渴望和结果反馈的实际方面的看法的深入了解,这应该为对试验管理和试验结果反馈实践的进一步调查提供信息。
There is growing interest in the provision of trial results to trial participants. However, there are a number of gaps in the research base relating to the closure of clinical trials and feedback of results to participants. The aim of this research was to explore the practice of feeding back trial results to trial participants and to identify best practice in this area. Postal questionnaires were sent to members of the UK National Cancer Research Institute Clinical Studies Groups (NCRI CSG) and to patients over the age of 18 years who completed trial treatment (located in one Cancer Network) during a 16-month period (April 07–July 08). 145 NCRI CSG member surveys and 81 patient questionnaires were returned. The vast majority of all respondents supported the idea of offering results to trial participants. However, NCRI members and trial participants differed in their opinions about the timing and method for the provision of results. The results provide an insight into the views of these groups in relation to desire for results and practical aspects of results feedback which should inform further investigations into trial management and the practice of feedback of trial results.
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