Strategies to improve outcomes of youth experiencing healthcare transition from pediatric to adult HIV care in a large U.S. city

BACKGROUND: The healthcare transition (HCT) from pediatric to adult HIV care can be disruptive to HIV care engagement and viral suppression for youth living with HIV (YLH). METHODS: We performed qualitative interviews with 20 YLH who experienced HCT and with 20 multidisciplinary pediatric and adult HIV clinicians to assess and rank barriers and facilitators to HCT and obtain their perspectives on strategies to improve the HCT process. We used the Exploration Preparation Implementation Sustainment Framework to guide this qualitative inquiry. RESULTS: The most impactful barriers identified by YLH and clinicians focused on issues affecting the patient-clinician relationship, including building trust, and accessibility of clinicians. Both groups reported that having to leave the pediatric team was a significant barrier (ranked #1 for clinicians and #2 for YLH). The most impactful facilitator included having a social worker or case manager to navigate the HCT (listed #1 by clinicians and #2 by YLH); case managers were also identified as the individual most suited to support HCT. While YLH reported difficulty building trust with their new clinician as their #1 barrier, they also ranked the trust they ultimately built with a new clinician as their #1 facilitator. Factors reported to bridge pediatric and adult care included providing a warm handoff, medical record transfer, developing relationships between pediatric clinics and a network of youth-friendly adult clinics, and having the pediatric case manager attend the first adult appointment. Longer new patient visits, increased health communication between YLH and clinicians and sharing vetted clinician profiles with YLH were identified as innovative strategies. CONCLUSION: In this multi-disciplinary contextual inquiry, we have identified several determinants that may be targeted to improve HCT for YLH. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s13690-023-01057-8.