Marquez David X, Perez Adriana, Johnson Julene K, Jaldin Michelle, Pinto Juan, Keiser Sahru, Tran Thi, Martinez Paula, Guerrero Javier, Portacolone Elena
Department of Kinesiology & Nutrition University of Illinois at Chicago Rush Alzheimer's Disease Center Chicago Illinois USA.
Department of Family & Community Health School of Nursing University of Pennsylvania Philadelphia Pennsylvania USA.
Alzheimers Dement (N Y). 2022 Jul 26;8(1):e12331. doi: 10.1002/trc2.12331. eCollection 2022.
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 ( = 54), nine with Latino adults ages 50+ ( = 75), and eight with caregivers of Latino older adults with ADRD ( = 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.
尽管有证据表明，西班牙裔/拉丁裔人群患阿尔茨海默病及相关痴呆症（ADRD）的可能性是非拉丁裔白人的1.5倍，但在测试ADRD治疗方法的临床试验中，拉丁裔的代表性不足。需要有关促进拉丁裔参与ADRD临床试验的数据。我们利用深入的定性方法，以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；并提供及时且可行的策略，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月期间在加利福尼亚州收集数据，来自25个焦点小组（FGs）：8个小组由18至49岁的拉丁裔成年人组成（n = 54），9个小组由50岁及以上的拉丁裔成年人组成（n = 75），8个小组由患有ADRD的拉丁裔老年人的照顾者组成（n = 52）。还采访了12名社区组织管理人员。焦点小组和访谈的记录被录入Atlas.ti软件。三名独立的团队成员通过归纳/演绎定性内容分析对记录进行分析。我们对来自不同地点的利益相关者群体的数据进行三角测量，采用协作编码，并使用定性研究报告的综合标准。
一个总体主题是，一方面希望更多地了解ADRD并参与ADRD研究，但另一方面认识有限且机会不多，两者之间存在矛盾。确定了五个主题：（1）处于两难境地，（2）想要了解ADRD信息，（3）想要了解ADRD研究信息，（4）通过可信赖的当地组织了解研究人员，（5）通过参与研究机会践行利他主义。
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及教育。此外，与可信赖的当地、地区和国家组织合作可以增加参与度。重要的是，当研究团队展示利他行为并告知参与者需要他们参与的公共卫生原因时，拉丁裔的参与度会提高。
拉丁裔/西班牙裔参与阿尔茨海默病及相关痴呆症（ADRD）临床试验的情况有限。了解拉丁裔中ADRD的高患病率会增加参与意愿。看到研究人员的利他行为会增加参与意愿。来自多个组织的邀请会增加参与意愿。研究人员应说明需要拉丁裔参与的公共卫生原因。
