Increasing engagement of Hispanics/Latinos in clinical trials on Alzheimer's disease and related dementias.
Increasing engagement of Hispanics/Latinos in clinical trials on Alzheimer's disease and related dementias.
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DOI：
10.1002/trc2.12331
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发表时间：
2022
影响因子：
4.8
通讯作者：
Portacolone, Elena
中科院分区：
文献类型：
--
作者：
Marquez, David X;Perez, Adriana;Johnson, Julene K;Jaldin, Michelle;Pinto, Juan;Keiser, Sahru;Tran, Thi;Martinez, Paula;Guerrero, Javier;Portacolone, Elena
尽管有证据表明西班牙裔/拉丁裔人群患阿尔茨海默病和相关痴呆症（ADRD）的可能性是非拉丁裔白人的1.5倍，但拉丁裔在ADRD治疗的临床试验中代表性不足。需要关于拉丁美洲人参与ADRD临床试验的促进者的数据。我们利用深入的定性方法来阐明在大量不同的拉丁裔样本中参与ADRD临床试验的障碍和促进因素;并提供及时和可行的策略，以加速拉丁裔在ADRD临床试验中的代表性。2019年1月至2020年6月期间，在加州从25个焦点小组（FG）中收集了数据：8个小组为18至49岁的拉丁裔成年人（n = 54），9个小组为50岁以上的拉丁裔成年人（n = 75），8个小组为患有ADRD的拉丁裔老年人的护理人员（n = 52）。还采访了12名社区组织管理人员。将FG和访谈的文字记录输入Atlas.ti软件。三名独立的团队成员用归纳/演绎定性内容分析法分析了成绩单。我们对来自不同地点的利益相关者群体的数据进行了三角测量，我们使用了协作编码，并使用了报告定性研究的综合标准。一个首要的主题是希望更多地了解ADRD和参与ADRD研究之间的紧张关系，但意识和机会有限。确定了五个主题：（1）保持不确定性，（2）想要关于ADRD的信息，（3）想要关于ADRD的研究信息，（4）通过值得信赖的当地组织清除研究人员，（5）通过参与研究机会实践利他主义。为了增加拉丁裔社区在ADRD临床试验中的代表性，需要更好地传播关于ADRD和临床试验的双语信息和教育。此外，与值得信赖的地方、区域和国家组织合作可以提高参与度。重要的是，当研究团队表现出利他主义行为并告知参与者需要他们参与的公共卫生原因时，拉丁美洲人的参与可以增加。拉丁美洲人/西班牙裔人参与阿尔茨海默病和相关痴呆症（ADRD）的临床试验有限。了解拉丁美洲人ADRD的高患病率增加了参与的意愿。观察研究人员的利他行为会增加参与的意愿。来自多个组织的邀请增加了参与的意愿。研究人员应该包括需要拉丁美洲人参与的公共卫生原因。
Despite evidence that Hispanic/Latino populations are 1.5 times more likely than non‐Latino Whites to develop Alzheimer's disease and related dementias (ADRD), Latinos are underrepresented in clinical trials testing treatments for ADRD. Data are needed on facilitators of ADRD clinical trial participation in Latinos. We leveraged in‐depth qualitative methods to elucidate barriers and facilitators to participating in ADRD clinical trials in a large and diverse sample of Latinos; and to provide timely and actionable strategies to accelerate representation of Latinos in clinical trials on ADRD. Data were collected in California between January 2019 and June 2020 from 25 focus groups (FGs): eight with Latino adults ages 18 to 49 (n = 54), nine with Latino adults ages 50+ (n = 75), and eight with caregivers of Latino older adults with ADRD (n = 52). Twelve community‐based organization administrators were also interviewed. Transcripts of FGs and interviews were entered into Atlas.ti software. Three independent team members analyzed the transcripts with inductive/deductive qualitative content analysis. We triangulated data from stakeholder groups across sites, we used collaborative coding, and used the Consolidated Criteria for Reporting Qualitative Research. An overarching theme was a tension between wanting to learn more about ADRD and to participate in ADRD research but having limited awareness and opportunity. Five themes were identified: (1) remaining in limbo, (2) wanting information about ADRD, (3) wanting information on research about ADRD, (4) clearing researchers through trusted local organizations, and (5) practicing altruism through engagement in research opportunities. To increase representation of Latino communities in clinical trials on ADRD, bilingual information and education on ADRD and clinical trials needs to be better disseminated. Also, working with trusted local, regional, and national organizations can increase participation. Importantly, Latino participation can increase when research teams demonstrate altruistic actions and inform participants of public health reasons requiring their involvement. Participation in clinical trials on Alzheimer's disease and related dementias (ADRD) is limited among Latinos/Hispanics. Knowing the high prevalence of ADRD in Latinos increases willingness to participate. Observing altruism from researchers increases willingness to participate. Invitations from multiple organizations increases willingness to participate. Researchers should include public health reasons requiring Latinos’ involvement.