Patient, Caregiver and regimen characteristics associated with adherence to highly active antiretroviral therapy among HIV-infected children and adolescents

Background: This study assesses the relationship between child and caregiver perceptions of medication responsibility, disease knowledge, regimen complexity and adherence to highly active antiretroviral therapy among HIV-positive children. We also examine the association of adherence to child and caregiver demographic characteristics and surrogate markers of HIV disease. Methods: For this 6-month longitudinal study, 24 HIV-positive children (mean age = 14.0 years) being treated with highly active antiretroviral therapy and their caregivers completed measures of medication responsibility and disease knowledge. Medication Event Monitoring System caps calculated adherence across months I through 3 (time 1) and 4 through 6 (time 2). Results: Medication Event Monitoring System data revealed adherence rates of 81% at time 1 and 79% at time 2. Only 8% (n = 2) of child-caregiver pairs reported complete agreement regarding who held responsibility for medication-related tasks. Patients' responsibility for medication was correlated with age based on child (r = .51) and caregiver (r = .57; Ps < 0.05) perceptions, although their regimen knowledge was not. Greater regimen knowledge among caregivers and fewer child-caregiver discrepancies about medication responsibility predicted better adherence (adjusted R-2 = .45). Finally, adherence was correlated with CD4 percentages at time 1 (r = .50) and viral load at time 1 (r = -.56) and time 2 (r = -.68; Ps < 0.05). Conclusions: Medication adherence among HIV-infected children is lower than required for optimal viral suppression. Adherence is related to surrogate markers of HIV disease but not to child or caregiver demographic variables. Responsibilities for medication-related tasks should be clarified among family members, regimen knowledge should be emphasized and caregivers should avoid assigning treatment responsibility to a child prematurely.