Transitioning HIV-infected adolescents to adult care at 14 clinics across the United States: using adolescent and adult providers’ insights to create multi-level solutions to address transition barriers

ABSTRACT

HIV-infected adolescents have disproportionately low rates of care retention and viral suppression. Approximately half disengage from care while transitioning to adult clinics, in part due to fragmented care systems and lack of streamlined protocols. We conducted 58 qualitative interviews with social service and health care providers across 14 Adolescent Trials Network clinics (n = 28) and 20 adult clinics that receive transitioning adolescents (n = 30) from August 2015–June 2016. We used the constant comparative approach to examine processes, barriers, and facilitators of adult care transition. Transition barriers coalesced around three levels. Structural: insurance eligibility, transportation, and HIV-related stigma; Clinical: inter-clinic communication, differences in care cultures, and resource/personnel limitations; and Individual: adolescents’ transition readiness and developmental capacity. Staff-initiated solutions (e.g., grant-funded transportation) were often unsustainable and applied individual-level solutions to structural-level barriers. Comprehensive initiatives, which develop collaborative policies and protocols that support providers’ ability to match the solution and barrier level (i.e., structural-to-structural), are sorely needed. These initiatives should also support local systematic planning to facilitate inter-clinic structures and communication. Such approaches will help HIV-infected adolescents transition to adult care and improve long-term health outcomes.

KEYWORDS:

• HIV/AIDS
• adolescent health
• care transition
• qualitative
• barriers to care

Acknowledgements

We acknowledge the contribution of the investigators and staff at the following sites that participated in this study: University of South Florida, Tampa (Emmanuel, Straub, Enriquez-Bruce), Children’s Hospital of Los Angeles (Belzer, Tucker), Children’s National Medical Center (D’Angelo, Trexler), Children’s Hospital of Philadelphia (Douglas, Tanney), John H. Stroger Jr. Hospital of Cook County and the Ruth M. Rothstein CORE Center (Martinez, Henry-Reid, Bojan), Montefiore Medical Center (Futterman, Campos), Tulane University Health Sciences Center (Abdalian, Kozina), University of Miami School of Medicine (Friedman, Maturo), St. Jude’s Children’s Research Hospital (Flynn, Dillard), Baylor College of Medicine, Texas Children’s Hospital (Paul, Head); Wayne State University (Secord, Outlaw, Cromer); Johns Hopkins University School of Medicine (Agwu, Sanders, Anderson); The Fenway Institute (Mayer, Dormitzer); and University of Colorado (Reirden, Chambers).

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

This work was supported by the Adolescent Trials Network for HIV/AIDS Interventions (ATN) from the National Institutes of Health [grant number U01 HD 040533], [grant number U01 HD 040474] through the National Institute of Child Health and Human Development (B. Kapogiannis), with supplemental funding from the National Institutes on Drug Abuse (S. Kahana) and Mental Health (P. Brouwers, S. Allison). The study was scientifically reviewed by the Community Prevention Leadership Group. Network, scientific and logistical support was provided by the ATN Coordinating Center (C. Wilson, C. Partlow) at The University of Alabama at Birmingham. Network operations and analytic support was provided by the ATN Data and Operations Center at Westat, Inc. (B. Harris, B. Driver). The comments and views of the authors do not necessarily represent the views of the Eunice Kennedy Shriver National Institute of Child Health and Human Development. Morgan Philbin was supported by a NIDA-funded K01 [grant number K01DA039804A] during manuscript development.