AALPHI study of HIV-infected young
24 October 2012
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
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.
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
- Neurocognitive function and psychosocial
- Heart disease
- Metabolic function
- Sexual health
Participants will be interviewed in private
about their health by the AALPHI research nurses every year.
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.