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 self manage 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.