“They are starting from ten steps back”: a mixed methods study comparing community-based versus clinic-based HIV testing among adolescents and young adults living with HIV in Haiti

Community-based HIV testing can identify high-risk adolescents and young adults living with HIV (AYALH), but data on long-term outcomes of AYALH identified via community-based testing is limited. We compared outcomes among AYALH 15–24 years identified in community-based campaigns to those who self-presented to an HIV clinic in Haiti. We measured retention 12-months after antiretroviral therapy (ART) initiation and factors associated with retention including time to ART initiation, assessed as a binary variable: immediate (≤7 days from HIV diagnosis) or delayed (>7 days from HIV diagnosis). Focus group discussions with providers highlighted AYALH’s experience of entering care via both routes and recommendations for improving outcomes. 606 AYALH tested HIV-positive: 191 community-testers and 415 clinic-testers. Sociodemographic characteristics differed between groups: mean age 21 vs. 22 (p < 0.01), 88% vs. 74% female (p < 0.01), and 90% vs. 74% reported no income (p < 0.01). 12-month retention was 57% among community-testers and 68% among clinic-testers (p = 0.05). Those who immediately initiated ART had higher odds of non-retention (aOR, 1.62; 95%CI: 1.04–2.54; p = 0.03). Qualitative data suggested community-testers lack social support and were less emotionally prepared for diagnosis. Community-testers who immediately initiated ART were at highest risk of non-retention and are in need of enhanced psychosocial and clinical support to optimize outcomes.