Health outcomes following transition from paediatric to adult care among young people with HIV in the UK

With increasing numbers transferring from paediatric to adult HIV care, a limited number of studies have investigated the health outcomes of young people post-transfer, with inconsistent findings reported. This thesis aims to investigate the risk of disengagement from care and health outcomes of young people and the availability of youth-friendly services following transfer to adult care. In this thesis, data linkage algorithms were developed to link national paediatric cohort data from the Collaborative HIV Paediatric Study (CHIPS) to adult data from the UK Collaborative HIV (UK CHIC) study and two national HIV surveillances systems: Survey of Prevalent HIV Infections Diagnosed (SOPHID); and HIV and AIDS Reporting System (HARS). By five years post-transfer, one-in-eleven young people had experienced an AIDS event and/or died, one-in-twenty became loss-to-follow-up (LTFU) and a quarter had experienced severe immunosuppression or viral failure. Young people with poorer health outcomes in paediatric care were at higher risk of AIDS/mortality, poor immunological and virological outcomes in adult care, and provision of youth-friendly adult services had no association with improved health outcomes and engagement in adult care. The lack of association is likely attributable to the cross-sectional nature of the clinic-level data. Having measured cascade of care post-transfer to adult care, the majority of young people had completed a first adult visit, were engaged and on ART, while low levels were virally suppressed and with a good immune status. However, this group had significantly better cascade outcomes when compared to young people with behaviourally-acquired HIV (BHIV) in adult care. My findings highlight the need for additional resources for young people with pre-existing problems managing their HIV disease in paediatric care. As young people from paediatric care progressed considerably better across the adult care pathway compared to newly diagnosed young people with BHIV, HIV exposure-based interventions may be beneficial.