A call to address structural barriers to Hispanic/Latino representation in clinical trials on Alzheimer's disease and related dementias: A micro-meso-macro perspective.
A call to address structural barriers to Hispanic/Latino representation in clinical trials on Alzheimer's disease and related dementias: A micro-meso-macro perspective.
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DOI：
10.1002/trc2.12389
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发表时间：
2023-04
影响因子：
4.8
通讯作者：
Portacolone, Elena
中科院分区：
文献类型：
--
作者：
Aranda, Maria P;Marquez, David X;Gallagher-Thompson, Dolores;Perez, Adriana;Rojas, Julio C;Hill, Carl V;Reyes, Yarissa;Dilworth-Anderson, Peggye;Portacolone, Elena
这篇观点论文阐述了美国拉美裔/拉丁裔(这里指拉丁裔)在一个重大公共卫生问题上的经历--在阿尔茨海默病和相关痴呆(AD/ADRD)临床试验中，拉丁裔人的代表性不足。拉丁裔人患AD/ADRD的风险增加，疾病负担更重，接受的护理和服务较少。我们提出了一个新的理论框架--AD/ADRD试验招募多样化的微观-中观-宏观框架--该框架考虑了多层次的障碍及其对拉丁裔试验招募的影响。基于对同行评议文献的回顾和我们与拉丁裔社区的生活经验，我们借鉴了我们在健康公平和差异研究、拉丁裔研究、社会工作、护理、政治经济学、医学、公共卫生和AD/ADRD临床试验方面的跨学科专业知识。我们讨论了可能阻碍或加速拉丁裔代表的因素，最后呼吁采取行动，并建议采取大胆的前进道路。在对70,000多名美国人进行的200多项临床试验中，拉丁裔参与者只占AD/ADRD试验样本的一小部分。招募拉丁裔参与者的努力通常涉及个人和家庭层面的因素(微观层面)，如语言、文化信仰、衰老和记忆力丧失的知识、有限的研究意识和后勤考虑。理解招聘障碍的科学努力在很大程度上仍停留在这一水平，导致对上游体制和政策层面障碍的关注减少，最终在这些障碍中围绕科学政策和资金分配做出决定。这些结构性障碍包括试验预算、研究方案、劳动力能力、医疗保健相关障碍、审查和批准临床试验资金的标准、传播结果的标准、病因学焦点和健康的社会决定因素等方面的不足或错位。今后的科学工作应应用和测试促进AD/ADRD试验招聘多样化的微观-中观-宏观框架，以审查AD/ADRD研究和护理中历来代表性不足群体的结构性招募障碍。
This perspective paper addresses the US Hispanic/Latino (herein, Latino) experience with regards to a significant public health concern—the underrepresentation of Latino persons in Alzheimer's disease and related dementias (AD/ADRD) clinical trials. Latino individuals are at increased risk for AD/ADRD, experience higher disease burden, and low receipt of care and services. We present a novel theoretical framework—the Micro‐Meso‐Macro Framework for Diversifying AD/ADRD Trial Recruitment—which considers multi‐level barriers and their impact on Latino trial recruitment. Based on a review of the peer‐reviewed literature and our lived experience with the Latino community, we drew from our interdisciplinary expertise in health equity and disparities research, Latino studies, social work, nursing, political economy, medicine, public health, and clinical AD/ADRD trials. We discuss factors likely to impede or accelerate Latino representation, and end with a call for action and recommendations for a bold path forward. In the 200+ clinical trials conducted with over 70,000 US Americans, Latino participants comprise a fraction of AD/ADRD trial samples. Efforts to recruit Latino participants typically address individual‐ and family‐level factors (micro‐level) such as language, cultural beliefs, knowledge of aging and memory loss, limited awareness of research, and logistical considerations. Scientific efforts to understand recruitment barriers largely remain at this level, resulting in diminished attention to upstream institutional‐ and policy‐level barriers, where decisions around scientific policies and funding allocations are ultimately made. These structural barriers are comprised of inadequacies or misalignments in trial budgets, study protocols, workforce competencies, healthcare‐related barriers, criteria for reviewing and approving clinical trial funding, criteria for disseminating findings, etiological focus and social determinants of health, among others. Future scientific work should apply and test the Micro‐Meso‐Macro Framework for Diversifying AD/ADRD Trial Recruitment to examine structural recruitment barriers for historically underrepresented groups in AD/ADRD research and care.