Recruitment and Retention of Underrepresented Populations in Alzheimer’s Disease Research: A Systematic Review

Introduction: 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. Methods: 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. Results: 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. Discussion: 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

Hospital discharge documentation of a designated clinician for follow-up care and 30-day outcomes in hip fracture and stroke patients discharged to sub-acute care

Abstract Background Transitions to sub-acute care are regularly complicated by inadequate discharge communication, which is exacerbated by a lack of clarity regarding accountability for important follow-up care. Patients discharged to sub-acute care often have complex medical conditions and are at heightened risk for poor post-hospital outcomes, yet many do not see a provider until 30 days post discharge due to current standards in Medicare regulations. Lack of designation of a responsible clinician or clinic for follow-up care may adversely impact patient outcomes, but the magnitude of this potential impact has not been previously studied. Methods We examined the association of designating a responsible clinician/clinic for post-hospital follow-up care within the hospital discharge summary on risk for 30-day rehospitalization and/or death in stroke and hip fracture patients discharged to sub-acute care. This retrospective cohort study used Medicare Claims and Electronic Health Record data to identify non-hospice Medicare beneficiaries with primary discharge diagnoses of stroke/ or hip fracture discharged from one of two urban hospitals to sub-acute care facilities during 2003–2008 (N = 1130). We evaluated the association of omission of the designation of a responsible clinician/clinic for follow-up care in the hospital discharge summary on the composite outcome of 30-day rehospitalization and/or death after adjusting for patient characteristics and utilization. We used multivariate logistic regression robust estimates clustered by discharging hospital. Results Patients whose discharge summaries omitted designation of a responsible clinician/clinic for follow-up care were significantly more likely to experience 30-day rehospitalization and/or death (OR: 1.51, 95% CI 1.07–2.12, P = 0.014). Conclusions The current study found a strong relationship between the omission of a responsible clinician/clinic for follow-up care from the hospital discharge summary and the poor outcomes for patients transferred to sub-acute care. More research is needed to understand the role and impact of designating accountability for follow-up care needs on patient outcomes