Adherence to medication regimens among children with human immunodeficiency virus infection

BACKGROUND: Rigorous adherence to antiretroviral medication regimens is necessary to achieve and maintain undetectable viral levels. This study describes adherence in a population of children with HIV infection. METHODS: Caregivers of HIV-infected children were interviewed about their experiences with administration of medications for treatment of HIV, opinions regarding medication-related issues and the potential usefulness of interventions to improve adherence. RESULTS: In the 90 caregiver interviews completed, 78% of the children were taking 3 or more medications, 17% missed a dose in the previous 24 h and 43% missed at least 1 dose in the previous week. Children whose caregivers reported no missed doses in the previous week (adherent) were more likely to have an HIV viral load <400 copies/ml (50% vs. 24%, P = 0.04). Nonadherent caregivers (who reported 1 or more missed doses in the previous week) were more likely than adherent caregivers to agree with a statement that full adherence is impossible (44% vs. 12%, P = 0.001) and express the need for more help with medication administration (26% vs. 6%, P = 0.02). They were less likely to have informed the school or day-care site about the child's HIV infection (42% vs. 67%, P = 0.05) and more concerned about the child's teachers and friends finding out (54% vs. 31%, P = 0.05). Of 10 potential interventions 6 were rated by a majority of respondents as "very helpful": better tasting medications (81%); longer dosing intervals (72%); medications that did not require refrigeration (63%); access to 24-h telephone advice (62%); a follow-up call from a health care provider (57%); and a pill organizer (56%). CONCLUSIONS: Caregivers' perceptions that adherence is too difficult or concerns about loss of privacy may affect their ability to adhere to complicated medication regimens. Caregivers felt that the most helpful interventions would be modifications to improve the convenience and palatability of medications and increased access to medical advice.