Offering to return results to research participants: Attitudes and needs of principal investigators in the Children's Oncology Group
Offering to return results to research participants: Attitudes and needs of principal investigators in the Children's Oncology Group
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DOI：
10.1097/00043426-200309000-00006
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发表时间：
2003-09-01
影响因子：
1.2
通讯作者：
Weijer, C
中科院分区：
文献类型：
--
作者：
Fernandez, CV;Kodish, E;Weijer, C
目的：在临床研究结束后向参与者返回结果摘要的提议具有许多潜在益处。作者确定了目前的做法和态度和需要的研究人员在建立程序返回结果的research participation.Methods：互联网调查的所有236名主要研究者（PI）的儿童肿瘤组在2002年5月记录PI和机构的人口统计，目前的做法，并认为障碍和需要的PI为创造研究成果programs.Results：150名（63.8%）PI做出了回复。很少有机构（n = 5）建立了全面的计划，提供回报的结果。参与者指出，执行这些方案的主要障碍是编写非专业摘要、时间限制、与参与者联系的任务以及参与者可能遇到的困难。PI确定了以下促进因素，以在自己的机构建立一个程序：奠定摘要，网站，准备肿瘤学家的摘要，和财政信贷。关于何时应共享结果没有明确的共识：30%的人表示在研究结束后，24%的人表示在结果发表时。相当大比例的受访者反对或强烈反对实施的普遍提供的结果research participations.Conclusions：很少有儿童肿瘤学组机构的方案，提供返回的结果，研究participations.Conclusions。已经查明了这一进程的重大障碍和促进因素。
Purpose: The offer to return a summary of results to participants after the conclusion of clinical research has many potential benefits. The authors determined current practice and attitudes and needs of researchers in establishing programs to return results to research participants.Methods: An Internet survey of all 236 principal investigators (Pis) of the Children's Oncology Group in May 2002 recorded PI and institutional demographics, current practice, and perceived barriers to and needs of PIs for the creation of research results programs.Results: One hundred fifty (63.8%) PIs responded. Few institutions (n = 5) had established, comprehensive programs to offer the return of results. PIs indicated that major impediments to the implementation of such programs are the preparation of lay summaries, time constraints, the task of contacting participants, and potential distress for the participants. PIs identified the following facilitators to the establishment of a program in their own institution: lay summaries, web site, preparation of an oncologist's summary, and financial credits. There was no clear consensus as to when the results should be shared: 30% indicated after the study was closed and 24% indicated at the time of publication of results. A substantial proportion of respondents opposed or strongly opposed the implementation of a universal offering of results to research participants.Conclusions: Few Children's Oncology Group institutions have programs that offer the return of results to research participants. Significant barriers and facilitators to this process have been identified.