Strengthening Routine Electronic Health Data to Improve Care for Advanced HIV Disease in Children and Adolescents in Uganda: UP ART–THRIVE Study
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Uganda continues to face a high HIV burden among children and adolescents, with an estimated 71,000 young people aged under 15 years living with HIV and 3,100 AIDS-related deaths in 2024. Many of these deaths are preventable with timely diagnosis, monitoring, and lifelong antiretroviral therapy, but children and adolescents living with HIV remain at higher risk of advanced HIV disease (AHD) than adults, according to study site electronic medical record (EMR) data.
Preventing AHD requires timely screening, careful clinical monitoring, and ensuring that children are assessed promptly and receive the full package of care recommended by the WHO and the Uganda Ministry of Health (MOH). Across Uganda, HIV clinics routinely record detailed patient information through EMR systems. These health data provide a valuable opportunity to understand how AHD is being identified and managed in practice, however, they can only support improvements in care if they are complete, accurate, and correctly interpreted.
The THRIVE UP-ART study is a sub-study of the Uganda Paediatric and Adolescent HIV Cohort on Antiretroviral Therapy (UP-ART), a long-standing observational cohort study capturing data on children and adolescents receiving HIV care across Uganda. Under the THRIVE sub-study, we are working closely with the MOH and the UP-ART team to strengthen both the quality and use of routine care data, better understanding the current gaps in AHD screening and management to support improvements in care.
Improving data quality through training and feedback
In November 2025, the UP-ART–THRIVE team conducted a data quality assessment across three participating hospitals, reviewing EMRs from 1,875 children and adolescents in care in 2021 to 2024. The central data and analysis team assessed the completeness of key AHD indicators and produced site-specific reports summarizing data quality and key findings.
These reports were shared with clinicians and data officers during on-site feedback sessions and trainings. Teams jointly reviewed and interpreted the findings to determine whether observed gaps were attributable to missed screening, incomplete documentation in the EMR, or interruptions in service delivery due to diagnostic stockouts.
The trainings focused on practical actions to improve data quality and use, including strengthening documentation practices, refining data extraction processes, and reinforcing national guidance on AHD screening and management. Facility teams began detailed checks comparing EMR against source documents, and developed site-specific action plans. Follow-up assessments are planned to track progress.
Why this matters
Investing in high‑quality electronic health data has long‑term public health benefits. With stronger routine care data, it becomes possible to track whether children and adolescents receive recommended AHD screening and care; identify gaps in AHD diagnosis, prevention and treatment; understand who is most at risk; and monitor trends and inequalities over time. These insights are critical to informing national policies and strengthening pediatric HIV care overall.
By investing in better data, the UP ART–THRIVE study aims to turn routinely collected information into actionable insights supporting earlier detection of AHD and preventing avoidable deaths among children and adolescents living with HIV.
Continuing the Conversation at AIDS 2026
As countries continue to integrate HIV services, ensuring that routine data remain complete, visible, and actionable will be essential to protecting access to AHD care. These challenges will be explored at the AIDS 2026 satellite session, Sustaining Advanced HIV Disease Care: Lessons from Program Integration and Country Experiences, where the Uganda MOH will share country perspectives on sustaining AHD services during HIV service integration, while Penta will bring insights from pediatric operational research to discuss how integrated systems can better identify and support children and adolescents living with AHD.
Through the generous support of Unitaid, the Clinton Health Access Initiative (CHAI)-led THRIVE Project is enabling access to critical prevention, screening, and treatment commodities for advanced HIV disease to dramatically reduce mortality among adults and children living with HIV. The THRIVE project is conducted in partnership with AFROCAB and Penta.
Disclaimer: The views expressed are those of Penta and do not necessarily reflect those of Unitaid or other partners.
