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促进西班牙裔/拉丁裔人群参与阿尔茨海默病和相关痴呆症临床研究的因素、挑战和信息传递策略:文献综述。

Facilitators, Challenges, and Messaging Strategies for Hispanic/Latino Populations Participating in Alzheimer's Disease and Related Dementias Clinical Research: A Literature Review.

机构信息

Division of Extramural Activities, National Institute on Aging, National Institutes of Health, Bethesda, MD, USA.

Kelly Government, Kelly Services, Inc., Rockville, MD, USA.

出版信息

J Alzheimers Dis. 2021;82(1):107-127. doi: 10.3233/JAD-201463.

Abstract

Alzheimer's disease and Alzheimer's disease-related dementias (AD/ADRD) disproportionally affect Hispanic and Latino populations, yet Hispanics/Latinos are substantially underrepresented in AD/ADRD clinical research. Diverse inclusion in trials is an ethical and scientific imperative, as underrepresentation reduces the ability to generalize study findings and treatments across populations most affected by a disease. This paper presents findings from a narrative literature review (N = 210) of the current landscape of Hispanic/Latino participation in clinical research, including the challenges, facilitators, and communication channels to conduct culturally appropriate outreach efforts to increase awareness and participation of Hispanics/Latinos in AD/ADRD clinical research studies. Many challenges identified were systemic in nature: lack of culturally relevant resources; staffing that does not represent participants' cultures/language; eligibility criteria that disproportionately excludes Hispanics/Latinos; and too few studies available in Hispanic/Latino communities. The paper also details facilitators and messaging strategies to improve engagement and interest among Hispanics/Latinos in AD/ADRD research, starting with approaches that recognize and address the heterogeneity of the Hispanic/Latino ethnicity, and then, tailor outreach activities and programs to address their diverse needs and circumstances. The needs identified in this article represent longstanding failures to improve engagement and interest among Hispanics/Latinos in AD/ADRD research; we discuss how the field can move forward learning from the experiences of the COVID-19 pandemic.

摘要

阿尔茨海默病和与阿尔茨海默病相关的痴呆症(AD/ADRD)不成比例地影响西班牙裔和拉丁裔人群,但西班牙裔/拉丁裔在 AD/ADRD 临床研究中的代表性严重不足。在试验中进行多样化的纳入是道德和科学的必要条件,因为代表性不足会降低将研究结果和治疗方法推广到受疾病影响最大的人群的能力。本文通过对西班牙裔/拉丁裔参与临床研究现状的叙事文献综述(N=210),介绍了相关发现,包括开展文化上适当的外展工作以提高西班牙裔/拉丁裔对 AD/ADRD 临床研究参与度和意识的挑战、促进因素和沟通渠道。确定的许多挑战具有系统性:缺乏与文化相关的资源;工作人员不代表参与者的文化/语言;不符合条件的标准不成比例地排除了西班牙裔/拉丁裔;西班牙语/拉丁裔社区中可用的研究太少。本文还详细介绍了促进因素和信息传递策略,以提高西班牙裔/拉丁裔对 AD/ADRD 研究的参与度和兴趣,首先是承认和解决西班牙裔/拉丁裔族群多样性的方法,然后针对他们的不同需求和情况调整外展活动和计划。本文确定的需求代表了在提高西班牙裔/拉丁裔对 AD/ADRD 研究的参与度和兴趣方面长期存在的失败;我们讨论了该领域如何从 COVID-19 大流行的经验中吸取教训向前发展。

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