Transitioning youth living with HIV to adult-oriented care: a statewide population-based study - Project Summary/Abstract Due to advances in antiretroviral therapy (ART), the vast majority of youth living with HIV (YLH) in the US now survive to adulthood, and, thus, must transition from pediatric to adult HIV care. Achieving a successful transition to adult HIV care is a pressing public health issue with implications for ongoing efforts to end the HIV epidemic in the US. During the pediatric-to-adult HIV care transition (“HCT”), youth must navigate forming new relationships with providers and taking on greater independence in their care. Challenges to a successful HCT also vary by geographic location and sociocultural context. As one of the rural states targeted by the Ending the HIV Epidemic (EHE) initiative, South Carolina (SC) is characterized by profound HIV disparities among racial, ethnic, sexual, and gender minority communities, as well as high rates of poverty, structural barriers to healthcare, and healthcare provider shortages. While there have been some attempts to characterize such transition in other southern states with high HIV burden, data regarding the status of HCT of YLH and barriers and facilitators of a successful HCT are still limited, largely because of some gaps in the existing research (e.g., with data predominately from YLH with perinatal acquisition, qualitative or quantitative studies with small sample sizes and short follow up time). To address the gaps in HCT research among YLH, we will build a longitudinal cohort (estimated ~6,000) of youth (13 to 24 years of age) who were diagnosed with HIV during 2005-2023, extract and link their electronic health records (EHR) data from six SC state agencies, and link these data to aggregated county-level community and social structural level data from multiple publicly available data sources to develop a robust, multi-faceted dataset with biological, clinical, behavioral, and contextual variables. With the integration of multilevel data from multiple sources and advanced data analytics (e.g., machine learning algorithms), the current study will assess the HCT status (e.g., successful, delayed, or loss/failure in transition) and post-transition care continuums (e.g., retention in adult care, viral suppression in adult care) among YLH over time, and identify the barriers and facilitators of success HCT for YLH. This study will provide an in-depth assessment of the HCT status of a large longitudinal cohort of YLH in SC using real world data. Identification of the barriers and facilitators for successful HCT of YLH could help policymakers and HIV care providers improve systems and services to better support YLH as they move from pediatric to adult-oriented HIV care and inform state health department to devise more precise, targeted intervention strategies for YLH to maintain continuous engagement in care during the transition, to support the ability of YLH to effectively manage their disease, and ultimately to decrease HIV-related morbidity and mortality rates among these youth, especially those who are minoritized.
