HIV is a leading cause of death among adolescents globally, due to management challenges which result in poorer outcomes in the care cascade as compared to adults, including poor rates of retention in care. Reasons for disengagement from care have not been well-explored among adolescents, and are expected to be complex and heterogeneous. Interventions to improve retention can be resource intensive and are challenging to implement broadly. There is an urgent need to identify adolescents at high risk for disengagement from HIV care, and to intervene early to retain these adolescents, in order to prevent deaths and optimize treatment outcomes. Dr. Leslie Enane aims to become a productive independent investigator in HIV implementation science, focused on improving pediatric and adolescent outcomes in the HIV care cascade, particularly in resource-limited settings. The objectives of this application are to develop those career skills by 1) using a mixed-methods approach to investigate factors underlying disengagement among adolescents with HIV in East Africa, and 2) developing an instrument to identify adolescents at high risk for disengagement, for whom proactive interventions may support retention. This project will utilize the well-developed epidemiologic and implementation science infrastructure of the NIH-funded International Epidemiologic Database to Evaluate AIDS East Africa Consortium (IeDEA-EA). Dr. Enane will be mentored by Dr. Rachel Vreeman, Dr. Kara Wools-Kaloustian, Dr. J. Dennis Fortenberry, Dr. Edith Apondi, and Prof. Winstone Nyandiko. Dr. Enane will first refine a conceptual model for adolescent disengagement from HIV care. She will achieve this through systematic literature review; qualitative inquiry with disengaged adolescents, caregivers, and healthcare workers; and synthesis of these findings with quantitative work in IeDEA-EA defining predictors of adolescent outcomes in the care cascade. Next, she will work from this conceptual model to develop and pilot a reliable, developmentally- and culturally-relevant instrument to assess adolescent risk for disengagement from HIV care, the Clinical Assessment for Retention and Engagement (CARE). CARE will be designed for utility in busy clinical settings, to identify adolescents at high risk for disengagement, for whom early interventions should be considered. Dr. Enane will develop an evidence-based algorithm to support clinical evaluation and intervention for adolescents at risk for disengagement. The algorithm will link positive screening results in domains of CARE to administration of valid clinical questionnaires, and/or appropriate interventions, to optimally support clinical management of adolescents at risk for disengagement. Completing this work with strong mentorship and access to experts in implementation science in IeDEA-EA, Dr. Enane will develop independence as a physician-scientist in pediatric HIV implementation science, gaining expertise in 1) qualitative and mixed-methods research, 2) instrument development, and 3) the design of interventions to improve HIV outcomes. Findings will support her R01 proposal to study CARE as part of an intervention package to improve retention and HIV outcomes for adolescents.
As the ?test and treat? strategy is scaled up globally, ensuring the long-term retention of patients in HIV care will be essential to the success of treatment programs, and to bringing an end to the HIV/AIDS epidemic. There is an urgent need for interventions to improve adolescent retention, in order to improve health outcomes, decrease the risk of onward HIV transmission, and support the successful transition of these adolescents into adulthood. The novel CARE instrument and algorithm will identify adolescents at risk for disengagement, and facilitate appropriate early targeted evaluation and intervention to support their retention in care, within the context of East African clinical settings.
