Rates of adherence, adherence measurement, and support services for children and adolescents living with HIV followed in global sites of the International Epidemiology Databases to Evaluate AIDS (IeDEA)

Abstract Introduction Supporting and improving antiretroviral therapy (ART) adherence and preventing the evolution of HIV drug resistance remain major challenges for children and adolescents living with HIV globally. In a large global HIV clinical data consortium, we sought to describe how global HIV care programs measure and support pediatric ART adherence, as well as patient-level measures of adherence. Methods We prospectively collected site-level data between June 2014-March 2015 using a site assessment survey and retrospectively examined patient-level data collected during routine clinical care, to provide a comprehensive assessment of pediatric ART adherence across the International Epidemiology Databases to Evaluate AIDS (IeDEA) cohort, in six global regions. All regions capturing patient-level data on adherence by any measure for children living with HIV aged less than 14 years between 2000–2015 were asked to contribute data. ART adherence was conceptualized as a binomial variable of “good” (greater than 90%) or “poor” (90% or less) adherence per visit. Results Clinical staff from 180 pediatric sites in 45 countries completed the adherence survey. Clinician adherence assessment (used at 87% of sites) and pharmacy refills (86% of sites) were the most common adherence measurement methods used globally. Counseling focused on adherence was the most commonly available support service, (94% of sites). 28,664 pediatric patients had at least one adherence measurement, to be included for adherence analyses. In East Africa and Southern Africa, higher baseline CD4 counts were associated with a greater likelihood of viral suppression; however, in Central and South America and the Caribbean (CCASAnet) and Asia–Pacific, we did not find a consistent relationship between baseline CD4 count and the likelihood of viral suppression. We found evidence that very young children ( 10 years of age), and males were less likely to experience viral suppression in East Africa and Southern Africa. Conclusion These findings indicate that the majority of global pediatric HIV care services routinely measure ART adherence for children living with HIV; however, few sites use objective or validated measures. Identifying subgroups of children and youth at highest risk for non-adherence allows care programs to target those most in need of adherence support or resistance monitoring.