June 5, 2023
IMPACT Health Equity Team members Maria P. Aranda and Peggye Dilworth-Anderson are principal author and co-author respectively, on this perspective paper addressing the US Hispanic/Latino experience of underrepresentation in Alzheimer’s disease and related dementias (AD/ADRD) clinical trials. Along with co-authors, the article explores how Latino individuals are at increased risk for AD/ADRD, experience higher disease burden, and receive less care and services. The authors 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.
Abstract
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.
Conclusion
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.