Young People in the United Kingdom and Ireland with Perinatally Acquired HIV: The Pediatric Legacy For Adult Services

Children with perinatally acquired HIV-1 infection are surviving into adolescence and increasingly transitioning toward adult services. Planning appropriate services in adult life requires an understanding of their progress through pediatric care. We describe the demographic features, disease progression, antiretroviral therapy (ART), and resistance in young people aged 10 years or more living in the United Kingdom and Ireland reported to the National Study of HIV in Pregnancy and Childhood (NSHPC) with prospective annual follow-up in the Collaborative HIV Paediatric Study (CHIPS) between 1996 and September 2007. Six hundred fifty-four perinatally infected young people were identified; 76% black African, 57% born abroad. Median age at presentation and duration of follow-up was 1 and 11 years, respectively, if born in the United Kingdom/Ireland, and 8 and 5 years if born elsewhere. One hundred sixty-nine (26%) ever had an AIDS-defining illness. Ten died during adolescence. At last follow-up, 64% were on ART, 18% off treatment having previously received ART and 18% were ART naive. Of 518 who had received highly active antiretroviral therapy (HAART), 47% were triple class experienced. At last follow-up 77 (12%) had CD4 counts less than 200 per microliter; of those on HAART, 78% had HIV-1 RNA <= 400 copies per milliliter, median CD4 count 554 (interquartile range [IQR] 324-802). Among 166 with resistance assays on HAART, 52% and 12% had dual- and triple-class HIV-1-associated resistance mutations, respectively. One hundred three (16%) young people had transferred to adult services. Young adults with perinatally acquired HIV-1 infection require coordinated multidisciplinary transitional care services and careful long-term follow-up in adult life.