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.

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.

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.

Objectives: Post-traumatic stress disorder (PTSD) is commonly found in parents and child following life-threatening pediatric illness or injury including cancer, organ transplant, traumatic brain injury, and admission to the pediatric intensive care unit. It can be diagnosed months to years after the event. The prevalence and significance of PTSD in parents and children following a childhood stroke are unknown. We examine the emotional outcomes of a cohort of 33 parents and 10 children following recent stroke in the child. Methods: We prospectively enrolled children with stroke of ages 7-18 years and parents of children with stroke ages 0-18 years whose stroke occurred in 2013 or 2014. Parents were screened for PTSD using the PTSD checklist and children with stroke ≥ 7 years of age were screened with the University of California Los Angeles PTSD Reaction Index. Emotional outcome of the child was examined with the Behavior Assessment System for Children (BASC-2). Parents were surveyed on their child’s stroke outcome with the Recurrence and Recovery Questionnaire (RRQ). Results: Of the 33 parents (10 fathers, 23 mothers) 18 (55%) met one or more of the 3 PTSD criteria and 8 (24%) met all criteria for PTSD. Although not yet reaching significance, RRQ is higher in the group of parents with PTSD (RRQ M= 1.2, SD=1.4) compared to parents without PTSD (M=0.6, SD=1.0). The subsample of children enrolled ranged in age from 7 to 17 years old at time of stroke. Although preliminary, of the children who were surveyed none met criteria for PTSD while 2 of the 9 (22%) had clinically significant levels of anxiety. Conclusion: Preliminary findings reveal a rate of PTSD in parents of children with childhood stroke similar to that found in parents of other critically ill children. We did not yet detect PTSD in our small sample of children. However, emotional ratings revealed that over 20% experience anxiety. The children of parents with PTSD had higher RRQ scores reflecting increased disability which may be related to the parent’s PTSD. PTSD in parents of a child with stroke and children with anxiety following stroke could impede compliance with therapeutic interventions and, consequently, lead to poorer functional outcome in the child.