A Qualitative Study Exploring Barriers and Facilitators of Enrolling Underrepresented Populations in Clinical Trials and Biobanking
A Qualitative Study Exploring Barriers and Facilitators of Enrolling Underrepresented Populations in Clinical Trials and Biobanking
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DOI：
10.3389/fcell.2019.00074
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发表时间：
2019-04-30
影响因子：
5.5
通讯作者：
Miele, Lucio
中科院分区：
文献类型：
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作者：
Davis, Terry C.;Arnold, Connie L.;Miele, Lucio
社会经济地位低的成年人、种族和少数民族群体以及生活在农村地区的个人在参加临床试验和生物信息库方面存在差异。为了确定不同群体中最有效的治疗方法，多样化的参与是必要的。这项研究的目的是使用定性的方法来确定可能影响代表性不足群体成员选择参与临床试验和/或生物库的可能性的因素。我们在路易斯安那州的城市和农村地区进行了14个焦点小组和7个电话访谈，以：(1)确定参与的障碍和促进者；(2)在制定明确的、文化上合适的语言和招聘战略方面征求意见。在103名参与者中，25人是安全网医疗保健提供者，18人是初级保健或肿瘤诊所患者，60人是社会和信仰团体的成员。患者和社区参与者说英语，79%是非裔美国人，81%是女性，24%生活在农村地区。确定的参与障碍包括：缺乏关于临床试验和生物库的知识；具体信息和参与机会有限；对临床试验和生物库促进者的信任和隐私关切包括：利他主义，对医学研究的高度兴趣，特别是可能使他们或其家人受益的研究；通俗易懂的语言，符合文化习惯的信息；便于获取研究；以及可信提供者的投入。此外，所有初级保健提供者都有兴趣为他们的患者提供临床试验选择，但没有时间搜索可用的试验。这项研究的结果可以为制定教育材料和战略，以增加未被充分代表的群体在临床试验和生物库中的参与提供参考。
Disparities exist in enrollment in clinical trials and biorepositories among adults with low socioeconomic status, racial and ethnic minority groups and individuals who live in rural areas. Diverse participation is necessary to identify the most effective treatments in different groups. The purpose of this study was to use qualitative methods to identify factors that may affect the likelihood that members of underrepresented groups choose to participate in clinical trials and/or biobanking. We conducted 14 focus groups and seven telephone interviews in urban and rural areas of Louisiana to: (1) identify barriers and facilitators to participation; and (2) elicit input in crafting clear, culturally appropriate language and recruitment strategies. Of 103 participants, 25 were safety-net healthcare providers, 18 were primary care or oncology clinic patients, and 60 were members of social and faith-based groups. Patients and community participants were English-speaking, 79% were African American, 81% were female and 24% lived in rural areas. Barriers to participation identified were lack of knowledge about clinical trials and biobanks; limited specific information and access to participation, trust and privacy concerns about clinical trials and biobanking Facilitators included: altruism, high interest in medical research particularly studies that might benefit them or their families; plain language, culturally appropriate information; convenient access to studies; and input of a trusted provider. In addition, all primary care providers were interested in having clinical trial options available for their patients but did not have time to search for available trials. Results of this study can inform the development of education materials and strategies to increase participation of underrepresented groups in clinical trial and biobanking.