Risks & Barriers Faced by Youth Infected with HIV Transitioning from Pediatric to Adult Health Care Settings

With the advent of highly active antiretroviral therapy (HAART), more youth with HIV infection are surviving through adolescence into adulthood, and with the advances in medical management, HIV has been reclassified as a chronic rather than a terminal illness. Adolescents may find the transition to adult health care difficult in part due to the coordinated comprehensive individualized services they receive in the pediatric health care system, which does not prepare them for the autonomy expected of them by the adult health care system. PURPOSE: The purpose of this study was to identify the risks and barriers to successful transition to adult heath care by youth infected with HIV and inform development of an effective model of transition. METHODS: Medical records of 13-24 year-old youth with HIV who attend an urban outpatient clinic were retrospectively evaluated after IRB approval using a comprehensive tool that was designed by content experts to identify risks and barriers facing the youth. Demographic/medical data included academic achievement, employment, IQ, adherence, and personal history of loss/death of a loved one, mental health diagnosis, suicide ideation/attempt, and childhood trauma, including family stability, interfacing with legal systems, substance use, early sexual debut, and sexual abuse. RESULTS: Analyses revealed a disadvantaged and “never –served” population disproportionately African American (91%) with a history of risky sexual behaviors and early sexual debut (77%), loss/death of a family member (74%), family abandonment (73%), sexual abuse (41%), substance use (64%), poor educational attainment (57%), mental health diagnosis (49%), and suicide ideation/attempt (21%). CONCLUSIONS: The tool was successful in identifying needs and barriers of youth with HIV. Data informed the development and implementation of a program to ensure successful transition of youth infected with HIV to adult health care. Findings also indicate a need for early and comprehensive assessment, identification of vulnerabilities, and intervention for adverse childhood events (ACE), in order to reduce subsequent risk for violence and behaviors facilitating transmission of HIV and behaviors leading to early death.