There are more than four million adolescents and young adults living with HIV in the world today. However, there are no mechanisms within current global surveillance data systems to distinguish how many of these young people were infected as infants or acquired HIV through risk behaviors in adolescence/young adulthood, and what proportion has subsequently transitioned from pediatric to adult HIV care. In order to address this serious gap, there is a critical need to harmonize HIV clinical and program data across the adolescent-to-adult HIV care transition period in a way that would be implementable in low- and middle-income country (LMIC) settings. The proposed research initiative, Creating a Global fRAmework of Data collection Used for Adolescent HIV Transition Evaluation (GRADUATE), seeks to establish a data collection and management platform that can guide clinical programs as to the demographic, socio-economic, clinical, and laboratory data they should be documenting in order to describe how adolescents are moving through the transition period within clinical care systems. GRADUATE would be created in the context of LMICs, where it could be used to conduct epidemiologic research and surveillance to understand how transition impacts program retention and antiretroviral therapy success or failure among young people. GRADUATE would promote a level of data granularity allowing disaggregation of data by age, sex, and infection exposure group that could dramatically change our understanding of how young women experience transitions in HIV care compared to young men, and of long-term survivors of perinatal infection compared to those infected at older ages. The new data management framework and research initiative would include 1) the identification of key variables and data definitions that capture the process of transition as well as the clinical and socio-economic predictors and outcomes across the transition period, 2) creation of data tables and online tools to facilitate data collection at the clinic level and for research purposes, and 3) pilot testing of the data-capture methods in Asia and sub-Saharan Africa at the patient level in individual clinics, within regional research cohort databases, and through a large provincial HIV program management and surveillance program. We hypothesize that a number of core indicators of the transition process can be derived from routine cohort data or can readily be captured through minimal additional data collection. We also hypothesize that transition success will vary across different settings and by sex, and that it will be possible to identify risk factors for poor transition outcomes that may be amenable to specific interventions. The proposed initiative will create the first broadly implementable and open access data platform to support measurement of adolescent HIV care transition outcomes.
The proposed research initiative seeks to establish a novel HIV data collection and management platform that can guide clinical programs as to the demographic, socio-economic, clinical, and laboratory data needed to describe how adolescents with HIV are transitioning to adult HIV care in low- and middle-income countries. This would promote a level of data granularity allowing disaggregation of global HIV data by age, sex, and infection exposure group that could dramatically change our understanding of how young women experience transitions in HIV care compared to young men, and of long-term survivors of perinatal infection compared to those infected at older ages. This will be the first broadly implementable and open access data platform to support measurement of adolescent HIV care transition outcomes.
| Davies, Mary-Ann; Hamlyn, Elizabeth (2018) HIV and adolescents: challenges and opportunities. Curr Opin HIV AIDS 13:167-169 |
| Sohn, Annette H; Judd, Ali; Mofenson, Lynne et al. (2018) Using Observational Data to Inform HIV Policy Change for Children and Youth. J Acquir Immune Defic Syndr 78 Suppl 1:S22-S26 |
| Judd, Ali; Davies, Mary-Ann (2018) Adolescent transition among young people with perinatal HIV in high-income and low-income settings. Curr Opin HIV AIDS 13:236-248 |
