An observational cohort study that aims to follow HIV-infected young people in the UK aged 13-21 as they move into adulthood has opened. Findings from the Adolescents and Adults Living with Perinatal HIV Cohort (AALPHI) study (known to young people as Alfie) will help health professionals improve HIV treatment and support for young people with HIV in the future.
The study will invite 400 young people who were infected with HIV as children, and 300 young people who are not HIV infected, but are either a sibling of or live in the same house as an HIV positive person in the study, or were born to an HIV positive mother. By comparing these two groups, we hope to be able to find out whether any ill-health in the HIV positive group is due to HIV, and anti-HIV drugs, or to lifestyle factors (e.g. environment, family circumstances, education). Participants will be recruited from paediatric and adult HIV clinics, as well as referral by study participants and the voluntary sector.
By the end of September 2012, 34 young people from 5 sites had signed up to the study. Staff at all participating sites have been extremely pro-active and supportive. Initial feedback from participants has been very positive. Recruitment of participants will continue until September 2013.
Until now, relatively little has been known about how HIV affects the health of adolescents who were infected as infants. But the breakthroughs in treatment of HIV in the late 1990s mean that children are now surviving into adolescence and adulthood, with HIV becoming a long term, manageable condition.
The Collaborative HIV Paediatric Study (CHIPS) has followed HIV-infected children in the UK until they move from paediatric to adult care. The move into adult care is a crucial period as it can often be linked to worsening health, with young people not attending appointments and not taking their medication regularly. Therefore it is imperative that young people are followed-up into adulthood.
The AALPHI cohort will describe the impact of life-long HIV and long-term ART on the following five areas of health:
- Neurocognitive function and psychosocial issues
- Heart disease
- Metabolic function
- Sexual health
Participants will be interviewed in private about their health by the AALPHI research nurses every year.
AALPHI is a collaboration between Medical Research Council Clinical Trials Unit (MRC CTU) and the HIV Young Persons Network (HYPNET), working with NHS clinics and voluntary organisations who support young people with HIV. The study has been awarded three years of funding from the Monument Trust (Sainsbury’s Family Charitable Trust).
If you want more information, think your organisation or clinic should be involved, or you have children or are yourself interested in participating, please do not hesitate to contact us on the e-mail below.