HIV Treatment Adherence Measurement and Reporting Concordance in Youth with Perinatally Acquired HIV Infection and Their Caregivers

We examined youth-caregiver adherence report concordance and association of different adherence self-report items with HIV RNA viral load (VL) in perinatally HIV-infected adolescents assessed in 2003-2008. Youth (n=194; 9-19 years) and their caregivers completed a multi-step 2-day recall, one item on last time medications were missed, and one item on responsibility for managing youths' medications. Across early (9-12 years), middle (13-15 years), and late (16+years) adolescence, both youth and caregivers reported having primary responsibility for youths' medication regimens and demonstrated poor to moderate youth-caregiver concordance on adherence items. Responses to the last-time-missed item had greater association with VL than did the 2-day recall, particularly for longer times (e.g., past month). By age group, significant associations with VL were found for caregiver reports in early adolescence, caregiver and youth reports in middle adolescence, and youth reports in late adolescence, suggesting that caregivers offer better reports of youth adherence during early adolescence, but by later adolescence, youth are better informants. Although design limitations preclude definitive conclusions about the reliability and validity of specific adherence items, this study suggests important issues related to age group, caregiver vs. youth informants of adherence, and recall periods for child adherence assessment that warrant further research.