Long term follow up of the UK and Ireland paediatric cohort as teenagers transition to adult service

1
Long term follow up of the UK and Ireland
paediatric cohort as teenagers transition to
adult services
Ali Judd,1 Caroline Foster,2 Caroline Sabin,3 Pat
A. Tookey,4 Hermione Lyall,2 Katja Doerholt,5
Janet Masters,4 Gareth Tudor-Williams,2 Diana M.
Gibb,1 on behalf of the Collaborative HIV
Paediatric Study 1MRC Clinical Trials Unit,
London, UK 2St Marys Hospital, London, UK
3Royal Free University College Medical School,
London, UK 4UCL Institute of Child Health,
London, UK, 5Bristol Royal Hospital for Children,
Bristol, UK
3 - CHARACTERISTICS OF PERINATALLY HIV INFECTED
TEENAGERS IN CHIPS
Figure Age of children in CHIPS by year of
follow-up n 353
406 482 544 633 724 819 941 1027 1083
1080 490 Reported to CHIPS to the end of
September 2007 data for 2007 incomplete.
4 THE NEED FOR A NEW COHORT STUDY OF YOUNG
ADULTS WITH PERINATAL INFECTION

• Why is a new study needed?
• Access to ART in children in resource poor
  settings is improving scale up will result in
  increasing numbers of perinatally infected
  children surviving into adulthood
• No commensurate evidence base on the long-term
  outcomes of life-long HIV as children age, or the
  long-term effects of ART
• Why not just extend CHIPS or follow-up through
  CHIC?
• Most of those who have left CHIPS are not part
  of another cohort CHIC only covers 40 of adults
  in treatment and both CHIC and CHIPS only collect
  a limited clinical dataset
• Some key questions are broader/ non-clinical
  (see box ?)
• Key aims of a new study
• What is the impact of life-long HIV and
  long-term ART on growth, pubertal, neurological
  and behavioural development?
• Which toxicities are associated with HIV disease
  and ART, when do they emerge and for how long do
  they persist?

KEY RESEARCH AREAS 1 Growth, pubertal and
metabolic development (including insulin
resistance, dyslipidemia, fat redistribution) 2 Ne
urological and behavioural function, and
psychosocial factors (including adherence,
educational attainment, employment,
psychiatry) 3 Disease progression (including
longitudinal progression, resistance, concurrent
infections) 4 ART-related toxicity (including
emergence and persistence metabolic,
cardiovascular and hepatotoxic complications and
hypersensitivity osteoporosis and
nephrotoxicity) 5 Sexual health and second
generation transmission (including pregnancy and
births, PMTCT, cervical cancer and response to
HPV)

5 - THE PROPOSED NEW COHORT - AALPHI
ADOLESCENTS AND ADULTS LIVING WITH PERINATAL HIV
Cohort cases Adolescents who know they have HIV
aged 12 years in CHIPS Potential
controls Uninfected siblings of cases Recently
infected adolescents identified through CHIC/
seroconverter studies External reference groups
(disease specific cohorts, population-based
cohorts)