Comparison of Self and Caregiver Reports of antiretroviral treatment adherence among children and adolescents living with HIV in western Kenya

Abstract

Background: Youth living with HIV with perinatal infection spend a lifetime taking antiretroviral treatment (ART) to suppress the virus, and face significant challenges to successfully maintaining ART adherence. Tools to measure adherence include self- report, medication event monitoring system (MEMS) pill bottle caps, pill counts, and plasma or hair drug levels; however, the inter-rater agreement between child and caregiver self-report has not been validated in an African setting. This study aims to assess inter-rater agreement between child and caregiver self-reports, compared to reporting from MEMS pill bottle caps. Methods: This was a secondary analysis of a cluster-randomized trial to evaluate an intervention for children living with HIV, conducted at the Academic Model Providing Access to Healthcare in western Kenya. We analyzed data from 285 child-caregiver dyads to compare adherence self-reported by children and their caregivers, and subsequently compared all self-reports to adher- ence reported by MEMS pill bottle caps to determine whether child or caregiver self-reports aligned more closely with adherence measured by MEMS. Results: Children and their caregivers reported similar levels of adherence and numbers of missed doses in the past month, and both reports were similarly associated with adherence reported by MEMS pill bottle caps. Children with a caregiver that was not a biological parent were significantly more likely to report more missed doses than their caregiver. The correlation coefficient for the relationship between the child and caregiver self-reports was 0.71; for the relationship between child report and MEMS was 0.23; and for the relationship between caregiver report and MEMS was 0.20. Both children and caregivers under-reported non- adherence compared to MEMS data. Conclusion: Children and caregiver self-reports were generally similar in reporting adherence and were not highly correlated with MEMS reports of adherence, with children and caregivers reporting higher level of adherence than the MEMS data. This may indicate that children and caregiver reports are similarly inaccurate or biased; however, further research with larger sample sizes is required to further understand the differences in these reports. Plain Language Summary Comparison of self-reported ART adherence rates among children and adolescents living with HIV in western Kenya The study aims to compare adherence between children and caregivers of Youth Living with HIV (YLWH) with perinatal infection, comparing data from 285 child-caregiver dyads and MEMS pill bottle caps. Results showed similar levels of adherence and missed 1 Arnhold Institute for Global Health, Icahn School of Medicine at Mount Sinai, New York, New York, United States 2 Academic Model Providing Access to Healthcare (AMPATH), Eldoret, Kenya 3 Moi University College of Health Sciences, Eldoret, Kenya 4 Waymark Care, San Fransico, United States 5 Center for Global Health Equity, Indiana University, Indianapolis, Indiana, United States Corresponding Author: Rachel Vreeman, Arnhold Institute for Global Health, Icahn School of Medicine at Mount Sinai, 1216 5th Ave., 5th Floor, New York, NY 10002, United States. Email: rachel.vreeman@mssm.edu Creative Commons Non Commercial CC BY-NC: This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 License (https://creativecommons.org/licenses/by-nc/4.0/) which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access page (https://us.sagepub.com/en-us/nam/open-access-at-sage). Original Research Article Journal of the International Association of Providers of AIDS Care Volume 23: 1-7 © The Author(s) 2024 Article reuse guidelines: sagepub.com/journals-permissions DOI: 10.1177/23259582241242335 journals.sagepub.com/home/jia doses in the past month, with a correlation coefficient of 0.71. However, children and caregivers reported higher levels of adher- ence than MEMS data. The study highlights the importance of understanding the reliability between self-reports and MEMS data in promoting adherence among YLWH