Gilmore-Bykovskyi Andrea L, Jin Yuanyuan, Gleason Carey, Flowers-Benton Susan, Block Laura M, Dilworth-Anderson Peggye, Barnes Lisa L, Shah Manish N, Zuelsdorff Megan
Division of Geriatrics, Department of Medicine, University of Wisconsin-Madison School of Medicine and Public Health, Madison, WI, USA.
University of Wisconsin-Madison School of Nursing, Madison, WI, USA.
Alzheimers Dement (N Y). 2019 Nov 19;5:751-770. doi: 10.1016/j.trci.2019.09.018. eCollection 2019.
Alzheimer's disease and related dementias (ADRD) disproportionately impact racial and ethnic minority and socioeconomically disadvantaged adults. Yet, these populations are significantly underrepresented in research.
We systematically reviewed the literature for published reports describing recruitment and retention of individuals from underrepresented backgrounds in ADRD research or underrepresented participants' perspectives regarding ADRD research participation. Relevant evidence was synthesized and evaluated for quality.
We identified 22 eligible studies. Seven studies focused on recruitment/retention approaches, all of which included multifaceted efforts and at least one community outreach component. There was considerable heterogeneity in approaches used, specific activities and strategies, outcome measurement, and conclusions regarding effectiveness. Despite limited use of prospective evaluation strategies, most authors reported improvements in diverse representation in ADRD cohorts. Studies evaluating participant views focused largely on predetermined explanations of participation including attitudes, barriers/facilitators, education, trust, and religiosity. Across all studies, the strength of evidence was low.
Overall, the quantity and quality of available evidence to inform best practices in recruitment, retention, and inclusion of underrepresented populations in ADRD research are low. Further efforts to systematically evaluate the success of existing and emergent approaches will require improved methodological standards and uniform measures for evaluating recruitment, participation, and inclusivity.
阿尔茨海默病及相关痴呆症（ADRD）对少数族裔和社会经济地位不利的成年人产生了不成比例的影响。然而，这些人群在研究中的代表性严重不足。
我们系统地回顾了文献，以查找已发表的报告，这些报告描述了ADRD研究中来自代表性不足背景的个体的招募和保留情况，或代表性不足的参与者对ADRD研究参与的看法。对相关证据进行了综合和质量评估。
我们确定了22项符合条件的研究。七项研究侧重于招募/保留方法，所有这些研究都包括多方面的努力和至少一个社区外展组成部分。在所使用的方法、具体活动和策略、结果测量以及关于有效性的结论方面存在相当大的异质性。尽管前瞻性评估策略的使用有限，但大多数作者报告说ADRD队列中的多样化代表性有所改善。评估参与者观点的研究主要集中在对参与的预先确定的解释上，包括态度、障碍/促进因素、教育、信任和宗教信仰。在所有研究中，证据的强度都很低。
总体而言，为ADRD研究中招募、保留和纳入代表性不足人群的最佳实践提供信息的现有证据的数量和质量都很低。要进一步努力系统地评估现有和新出现方法的成功，将需要改进方法标准和用于评估招募、参与和包容性的统一措施。
