Understanding linkage to care and engagement in care across 15 Adolescent Medicine Trials Network (ATN) clinics: Adolescent provider perspectives and implications for newly HIV-infected youth

Background: The National HIV/AIDS Strategy emphasizes rapid linkage to care for HIV-infected individuals. Understanding how providers initially link youth to care (linkage to care/LTC) and maintain youth in care (engagement in care/EIC) has implications for delivery of HIV-related services during early, critical years of HIV infection and treatment.

Methods: 124 staff interviews were conducted at 15 adolescent medicine clinics through an Adolescent Trials Network HIV LTC/EIC program evaluation. Content analysis examined differences and similarities of linkage and engagement in care. Data related to LTC and EIC rates were collected through clinic diaries completed by program staff.

Results: 1408 HIV-positive adolescents were enrolled, with successful LTC for 763 (i.e. a first medical visit within 42 days), and successful EIC for 681 (i.e. a second visit within 90 days). Qualitative data revealed differences in conceptualizations of LTC and EIC. Linkage was seen as mechanistic and health system driven. It was defined by the number of clinic visits, and included relatively little youth agency or involvement. In contrast, EIC was defined by youth taking responsibility and actively participating in their own care (e.g., “a year later, show up on own” or “accepting diagnosis”), involvement in clinical wrap-around services such as housing and mental health, and developing relationships with clinic staff.

Conclusions: Linkage and engagement are related but distinct aspects of care that require different resources and provider orientation toward newly diagnosed youth. Systematic implementation of seamless linkage and engagement services require refined understandings of similarities and differences between linkage and engagement in care.