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)

Rachel C Vreeman¹, Constantin T Yiannoutsos², Andrew Edmonds³, Valériane Leroy⁴, Geoffrey Fatti⁵, Pope Kosalaraksa⁶, Jorge Pinto⁷, Beverly Musick⁸, Winstone Nyandiko^{9

10}, Christelle Twizere¹¹, Madeleine Amorissani-Folquet¹², Safari Mbewe¹³, Fernando Mejia¹⁴, Michael L Scanlon¹⁵, Roxanne Martin¹⁶, Kara Wools-Kaloustian^{15

17}; IeDEA

Affiliations

¹ Department of Global Health and Health Systems Design, Arnhold Institute for Global Health, Icahn School of Medicine at Mount Sinai, 1216 Fifth Avenue, 5 Floor, New York, NY, 10029, USA. rachel.vreeman@mssm.edu.
² Department of Epidemiology and Biostatistics, City University of New York, School of Public Health and Health Policy, New York, USA.
³ Department of Epidemiology, Gillings School of Global Public Health, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA.
⁴ Inserm, University of Toulouse, Toulouse, France.
⁵ Division of Epidemiology and Biostatistics, Department of Global Health, Faculty of Medicine and Health Sciences, Stellenbosch University, Cape Town, South Africa.
⁶ Division of Infectious Diseases, Department of Pediatrics, Faculty of Medicine, Khon Kaen University, Khon Kaen, Thailand.
⁷ Division of Immunology School of Medicine, Federal University of Minas Gerais, Belo Horizonte, MG, Brazil.
⁸ Department of Biostatistics and Health Data Science, Indiana University School of Medicine, Indiana University, Indianapolis, IN, USA.
⁹ Moi University College of Health Sciences, Eldoret, Kenya.
¹⁰ Academic Model Providing Access to Healthcare (AMPATH), Eldoret, Kenya.
¹¹ Centre National de Référence en Matière de VIH/SIDA (CNR), Bujumbura, Burundi.
¹² Pediatric Department, Centre Hospitalier Universitaire de Cocody, Abidjan, Côte d'Ivoire.
¹³ Lighthouse Trust, Lilongwe, Malawi.
¹⁴ Universidad Peruana Cayetano Heredia, Instituto de Medicina Tropical Alexander Von Humboldt, Lima, Peru.
¹⁵ Indiana University Center for Global Health Equity, Indiana University, Indianapolis, IN, USA.
¹⁶ Department of Global Health and Health Systems Design, Arnhold Institute for Global Health, Icahn School of Medicine at Mount Sinai, 1216 Fifth Avenue, 5 Floor, New York, NY, 10029, USA.
¹⁷ Department of Medicine, Indiana University School of Medicine, Indianapolis, IN, USA.

PMID: 41039293
PMCID: PMC12492743
DOI: 10.1186/s12887-025-05939-4

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)

Rachel C Vreeman et al. BMC Pediatr. 2025.

. 2025 Oct 2;25(1):706.

doi: 10.1186/s12887-025-05939-4.

Authors

Affiliations

¹ Department of Global Health and Health Systems Design, Arnhold Institute for Global Health, Icahn School of Medicine at Mount Sinai, 1216 Fifth Avenue, 5 Floor, New York, NY, 10029, USA. rachel.vreeman@mssm.edu.
² Department of Epidemiology and Biostatistics, City University of New York, School of Public Health and Health Policy, New York, USA.
³ Department of Epidemiology, Gillings School of Global Public Health, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA.
⁴ Inserm, University of Toulouse, Toulouse, France.
⁵ Division of Epidemiology and Biostatistics, Department of Global Health, Faculty of Medicine and Health Sciences, Stellenbosch University, Cape Town, South Africa.
⁶ Division of Infectious Diseases, Department of Pediatrics, Faculty of Medicine, Khon Kaen University, Khon Kaen, Thailand.
⁷ Division of Immunology School of Medicine, Federal University of Minas Gerais, Belo Horizonte, MG, Brazil.
⁸ Department of Biostatistics and Health Data Science, Indiana University School of Medicine, Indiana University, Indianapolis, IN, USA.
⁹ Moi University College of Health Sciences, Eldoret, Kenya.
¹⁰ Academic Model Providing Access to Healthcare (AMPATH), Eldoret, Kenya.
¹¹ Centre National de Référence en Matière de VIH/SIDA (CNR), Bujumbura, Burundi.
¹² Pediatric Department, Centre Hospitalier Universitaire de Cocody, Abidjan, Côte d'Ivoire.
¹³ Lighthouse Trust, Lilongwe, Malawi.
¹⁴ Universidad Peruana Cayetano Heredia, Instituto de Medicina Tropical Alexander Von Humboldt, Lima, Peru.
¹⁵ Indiana University Center for Global Health Equity, Indiana University, Indianapolis, IN, USA.
¹⁶ Department of Global Health and Health Systems Design, Arnhold Institute for Global Health, Icahn School of Medicine at Mount Sinai, 1216 Fifth Avenue, 5 Floor, New York, NY, 10029, USA.
¹⁷ Department of Medicine, Indiana University School of Medicine, Indianapolis, IN, USA.

PMID: 41039293
PMCID: PMC12492743
DOI: 10.1186/s12887-025-05939-4

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 (< 2 years of age), older 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.

Keywords: Adherence; Adolescents; Children; HIV care continuum; Health systems.

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Conflict of interest statement

Declarations. Ethics approval and consent to participate: The patient-related data presented here are based on retrospective deidentified information collected on a routine basis in sites participating in the IeDEA consortium. These data were approved for use by the local institutional review boards in each of the IeDEA countries included in the analysis and consent requirements were deferred to the local institutional review boards. As the patient-level data was collected from routine patient care, consent was not required from either parents/caregivers or from the child and youth participants. Due to the large number of participating sites in IeDEA, we are unable to provide all approving IRBs and ethical committees along with this submission at this time. We are able to provide the approvals for the East Africa region, which is the leading and coordinating site for this site assessment: Indiana University Institutional Review Board:—IRB# 1105005574'Regional East Africa International Epidemiologic Databases to Evaluate AIDS (IeDEA) Consortium'and—IRB # 1105005572'International Epidemiologic Databases to Evaluate AIDS (IeDEA), East Africa: Proposal for Data Extraction and Analysis for the Initial Projects'. The patient-related data presented here are based on retrospective deidentified information collected on a routine basis in sites participating in the IeDEA consortium. These data were approved for use by the local institutional review boards in each of the IeDEA countries included in the analysis and consent requirements were deferred to the local institutional review boards. As the patient-level data were collected from routine patient care, consent was not required. All sites and IeDEA regional coordinating centres also had Institutional Review Board approvals in place permitting the collection of site-level data for the survey. Consent for publication: Not Applicable. Competing interests: The authors declare no competing interests.

Figures

**Fig. 1**
Map of IeDEA Regional Cohorts

**Fig. 2**
Adherence over time* in Central Africa and East Africa stratified by age at ART initiation. * Loess smoother and 95% confidence interval

**Fig. 3**
Virologic suppression by time on ART within IeDEA clinical sites in the Asia–Pacific, CCASAnet, East Africa, and Southern Africa

See this image and copyright information in PMC

References

1. Global AIDS updates. confronting inequalities: lessons for pandemic responses from 40 years of AIDS. Geneva: UNAIDS; 2021. p. 2021.
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1. San-Andrés FJ, Rubio R, Castilla J, Pulido F, Palao G, de Pedro I, et al. Incidence of acquired immunodeficiency syndrome-associated opportunistic diseases and the effect of treatment on a cohort of 1115 patients infected with human immunodeficiency virus, 1989–1997. Clin Infect Dis. 2003;36(9):1177–85. - DOI - PubMed
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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)

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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)

Authors

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Conflict of interest statement

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