HIV Knowledge Deficits in Youth Living with HIV: Missed Opportunities for Education and Engagement.

Abstract

Adolescents and young adults (AYA) bear a disproportionate burden of HIV in the United States, yet gaps in HIV‑related knowledge may undermine engagement in care, antiretroviral therapy (ART) adherence, and prevention efforts. We conducted a cross‑sectional survey of AYA receiving care at a hospital‑based clinic to assess HIV/STI knowledge and its association with clinical and demographic factors. Participants completed a survey capturing demographic variables, health behaviors, and a six‑item HIV/STI knowledge assessment. Electronic medical records were used to ascertain HIV status, mode of acquisition, viral suppression, and STI history. Associations between categorical predictors and item‑level knowledge were evaluated using Pearson's chi‑square tests. Among 76 participants (42.1% aged 22-25; 53.9% female), 46 (60.5%) were living with HIV, including 25 (54.3%) with perinatally acquired. Overall knowledge was low, with fewer than half of participants answering most items correctly, except for viral load monitoring (52.6%). Participants living with HIV were more likely to correctly identify HIV prevention strategies than peers without HIV (χ²(1) = 5.22, p=.022). Among those with HIV, adolescent‑acquired infection was associated with higher knowledge regarding prevention (χ²(1) = 10.99, p<.001) and viral load monitoring (χ²(1) = 5.46, p=.019) compared with perinatal infection. Knowledge did not differ by viral suppression, age, gender, or STI history. These findings demonstrate substantial HIV‑related knowledge gaps among AYA, including those living with HIV, and challenge assumptions that longer disease duration confers expertise. Developmentally tailored education and routine knowledge assessment may strengthen engagement in care and optimize long-term outcomes for youth with HIV.