More positive children are surviving into adult life and require tailored services

HIV-positive children are surviving into adult life and many adolescents in a UK cohort have been heavily pretreated with antiretroviral therapy with suboptimal responses and will challenge therapeutics in adult services, according to a cohort study. Teenagers need help transferring from paediatric to adult services, as well as information and tailored services to increase independence and choice, according to another study.

The Collaborative HIV Paediatric Study (CHIPS) looked at the evolving UK cohort of children at 18 centres in the UK and Ireland. [1] Of 759 children, 179 (24%) are adolescents between 12 and 19 years. 99 (56%) of the adolescents are female, 107 (61%) are of Black African origin, 47 (27%) are white, 151 (86%) were infected via vertical transmission, 11 (6%) via blood transfusion. 38% were born in the UK and Ireland, and 137 (78%) are being treated in London.

63 adolescents developed CDC stage C disease during follow-up and 4 have died during their adolescent years since 1996.

At last follow-up, 36 (20%) had never received antiretroviral therapy, 114 (64%) were on highly active antiretroviral therapy, only 66 (46%) of whom started HAART as their first regimen, the remainder receiving prior mono and/or dual therapy. More than one quarter of all adolescents in the cohort have been treated with more than 8 ARVs. Almost half of those on treatment have suboptimal virological response.

20 (11%) transferred to adult care services, with a median age at transfer of 17.0 years (range 15.3-18.8).

2 reported pregnancies, both were previously treatment naïve and received AZT (zidovudine) monotherapy during pregnancy.

CJ Foster and colleagues conclude: “HIV-infected children are surviving into adult life. In this cohort, many have been heavily pre-treated with antiretroviral therapy with suboptimal responses, and will challenge therapeutics in adult services.

D Melvin of St Mary’s Hospital, London, and colleagues conducted a self-administered anonymous patient questionnaire to identify teenagers’ views on healthcare concerns and service provision at two London clinics. [2]

19 teenagers (9 female) aged 13 to 19, all with vertically acquired HIV, responded. Most requested general information on healthy living and sexual development and sex education. Older teenagers (16 years or over) wanted more information on ARV treatment and HIV disclosure and the importance of understanding its implications. Most were told their HIV diagnosis with a healthcare professional present, but there was a wide variety of opinions on which age this was best done, although most said it should not be before 11. Most did not want school/college/work to be informed.

Services were rated highly by all except one respondent and the priorities included being able to meet the doctor alone and getting know regular clinic staff. Older teenagers wanted teenager-only clinics operating outside college hours and younger teenagers wanted a gradual introduction to adult services. Older adolescents were concerned about relationships, HIV transmission and having children; younger adolescents were worried about managing work and HIV secrecy at school as well as arguments with parents.

The authors conclude: “Addressing the needs of vertically infected adolescents has implications for both paediatric and adult HIV services. Transition should be viewed as a process throughout the adolescent years rather than a one off transfer of care”.

Comment

There is currently much discussion around best practice for the transition of adolescents from paediatric to adult care. CHIVA (Childrens HIV Association; http://www.bhiva.org/chiva) and i-Base recently convened a meeting to look at evolving models and produce guidelines that are currently in preparation.