An intervention to enhance Alzheimer's disease clinical research participation among older African Americans.

BACKGROUND: Alzheimer's disease (AD) rates are higher among African Americans than in other racial or ethnic groups. However, Black elders participate in research at lower rates than Whites. OBJECTIVE: The present study aimed to: (1) implement an informational protocol for African Americans elders and their loved ones about the benefits of clinical research and brain donation program participation in AD, and (2) quantitatively assess changes in knowledge, attitudes, and trust. METHODS: Participants included 52 African American participants from the Boston University Alzheimer's Disease Center research registry (74 ± 8 years, 83% female) and 11 loved ones. Registry participants completed a pre- and post-group survey assessing brain donation knowledge, factors influencing brain donation, attitudes about medical research, and trust in medical researchers. RESULTS: There were no significant changes in mean scores between the pre- and post-group surveys. However, post-group outcomes revealed that 69% of participants shared details from the protocol with loved ones, 27% expressed an interest in joining Center-sponsored studies, and 10% indicated an interest in changing their brain donation status. CONCLUSION: The informational protocol implemented in this study is an effective method to encourage family discussions about brain donation and increase interest in other AD research studies. Longitudinal follow-up is necessary to assess the long-term implications of these groups on participation in a brain donation program.

Perceptions, knowledge, incentives, and barriers of brain donation among African American elders enrolled in an Alzheimer's research program.

PURPOSE: To learn about African American older adults' knowledge and perceptions of brain donation, factors that relate to participating or not participating in a brain donation research program, and methods to increase African American brain donation commitment rates in the context of an Alzheimer's disease (AD) research program. DESIGN AND METHODS: African American older adults (n = 15) from the Boston University Alzheimer's Disease Core Center participant research registry enrolled in 1 of 2 focus groups of 90 min about brain donation. Seven participants were selected for a third follow-up focus group. RESULTS: Focus group transcripts were analyzed using consensual qualitative research methods, and 8 overarching themes emerged: (a) perceptions of and misconceptions about brain donation procedures, (b) racial minorities in medical research, (c) racial disparities and discrimination in medical settings, (d) influence of religion and spirituality, (e) family perceptions of and involvement in donation, (f) family history of disease and desire to find a cure, (g) prior exposure to medical and research settings, and (h) culturally sensitive approaches to brain donation. IMPLICATIONS: Culturally relevant educational protocols need to be created for use with African American older adults. These protocols should include information about brain donation procedures, rates of AD among Black elders, and potential benefits of donation to Black communities; inclusion of religious figures, family, and peers in donation education and decisions; and methods to address mistrust, including cultural competence trainings for staff.

Retaining HIV-infected patients in care: Where are we? Where do we go from here?

Retaining human immunodeficiency virus (HIV)-infected patients in medical care at regular intervals has been shown to be linked to positive health outcomes. This article examines the available literature and research on retention and engagement in care of HIV-infected patients. We identify the extent of the problem of keeping patients engaged in care, as well as analyze which groups of patients are likely to be lost to follow-up. A review of different ways to measure patient retention is considered, as well as some preliminary data that suggest successful ways to re-engage patients in care. The need to ensure that HIV-infected patients are retained in care is a pressing public health issue and one that affects multiple populations. Further research and exchange of information are needed to keep patients in continuous care and to ensure that all patients are provided with regular, high-quality care that achieves both desired patient and population health outcomes.