Experiences of transition to adult care and readiness to self-manage care in young people with perinatal HIV in England

Abstract

Background: There are few data on young people’s own experiences of transferring from paediatric to adult care, or readiness to self-manage care.
Methods: A total of 132 young people living with perinatal HIV, aged 14–25 years, answered questions about transition experiences.
Results: Of the participants, 45 (34%), with a median age of 16 (interquartile range [IQR] 16–17), were in paediatric care, of whom 89% reported that transition discussions had begun, at median age 15 (IQR 14–16) years. Young people in adult care were more likely than those in paediatric care to selfmanage appointments (90% vs 42% respectively, P < 0.001), and know their antiretroviral therapy (ART)
drugs (55% vs 37%, P = 0.033). Knowledge of most recent CD4 T cell count/VL was slightly better for those in adult care (48% vs 31%, P = 0.059); naming side effects of ART was similar (71% vs 60%, P = 0.119).
Conclusions: Transition discussions occurred before movement from paediatric to adult care. Further education around ART, potential side effects, and CD4 T cell count/viral load knowledge is required.