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历史上被边缘化的种族和族裔社区住院研究参与率下降的原因:一项范围综述。

Reasons for declining participation in inpatient research among historically minoritized racial and ethnic communities: A scoping review.

作者信息

Bavishi Poyani, Grimshaw Alyssa A, Rojas Perez Oscar F, Kiluk Brian D, Edelman E Jennifer

机构信息

Yale School of Public Health, New Haven, CT, USA.

Montefiore Medical Center, New York City, NY, USA.

出版信息

Contemp Clin Trials Commun. 2024 Nov 7;42:101386. doi: 10.1016/j.conctc.2024.101386. eCollection 2024 Dec.

Abstract

BACKGROUND

To promote equitable recruitment for studies conducted in the inpatient hospital setting, we sought to characterize reasons why individuals, both from historically minoritized racial and ethnic groups and the broader patient population, refuse participation in clinical trials within inpatient settings.

METHODS

An exhaustive search of the literature was conducted in Cochrane Library, Google Scholar, Embase, MEDLINE, PubMed, Scopus, and Web of Science databases to find relevant articles published from the inception of each database to April 30, 2023. Studies recruiting patients during their inpatient stay and reporting reasons for refusing participation in clinical trials met the inclusion criteria.

RESULTS

The search resulted in 2264 citations, of which 22 were included. Fourteen did not report data related to race, while 19 reported no ethnicity data. Reasons for refusal across trials included study burden and inconvenience (n = 16), transportation and logistical issues (n = 13), lack of interest in research (n = 12), and refusal to be randomized (n = 10). Prominent concepts included the importance of incorporating social support systems in consenting processes, lack of efforts to include data or recruitment efforts for individuals from minoritized groups, and physician involvement in recruitment.

DISCUSSION

To enhance participation among historically minoritized communities in clinical trials, greater efforts must be made to collect demographic information and document refusal reasons to inform future recruitment methods. Strategies include proactively accounting for culture and language differences in study design and recruitment and intentionally engaging social support networks. Limiting study burden and logistics and optimizing collaborations between clinical and research teams would promote accessibility and foster patient trust.

摘要

背景

为促进在住院医院环境中开展的研究实现公平招募,我们试图明确历史上处于少数地位的种族和族裔群体以及更广泛患者群体中的个体拒绝参与住院环境下临床试验的原因。

方法

在Cochrane图书馆、谷歌学术、Embase、MEDLINE、PubMed、Scopus和Web of Science数据库中对文献进行了详尽检索,以查找从每个数据库创建之初至2023年4月30日发表的相关文章。纳入标准为在患者住院期间招募患者并报告拒绝参与临床试验原因的研究。

结果

检索共得到2264条引文,其中22条被纳入。14项研究未报告与种族相关的数据,19项研究未报告族裔数据。各试验中拒绝参与的原因包括研究负担和不便(n = 16)、交通和后勤问题(n = 13)、对研究缺乏兴趣(n = 12)以及拒绝随机分组(n = 10)。突出的概念包括在同意过程中纳入社会支持系统的重要性、缺乏为少数群体个体纳入数据或招募工作的努力以及医生参与招募。

讨论

为提高历史上处于少数地位的社区参与临床试验的比例,必须做出更大努力来收集人口统计学信息并记录拒绝原因,以为未来的招募方法提供参考。策略包括在研究设计和招募中主动考虑文化和语言差异,并有意识地利用社会支持网络。减轻研究负担和后勤压力,优化临床和研究团队之间的合作,将提高可及性并增进患者信任。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/c2a7/11629279/f607a1c82a9f/gr1.jpg

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