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Young people with perinatally acquired HIV: a Transitioning UK cohort. C Foster, A Judd, H Lyall, T Dunn, K Doerholt, P Tookey, D Gibb For. Objectives. To describe in adolescents (age 10-19 yrs) in CHIPS : demographic clinical immunological
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Young people with perinatally acquired HIV: a Transitioning UK cohort. C Foster, A Judd, H Lyall, T Dunn, K Doerholt, P Tookey, D Gibb For
Objectives • To describe in adolescents (age 10-19 yrs) in CHIPS : demographic clinical immunological virological ART history Resistance data
Data Collection 2006 • CHIPS is a collaboration between the National Study of HIV in Pregnancy and Childhood (NSHPC), 52 clinical centres in the UK and Ireland and the MRC Clinical Trials Unit • CHIPS includes all children in follow-up since 1996 in the 52 participating centres • Annual prospective follow up since 2000 with prior retrospective data collection
Demographics (n=489) 489 (44%) of 1102 perinatally infected children in CHIPS are aged 10 yrs or above. Of these: • 52% female • 74% are of Black African origin • 56% born outside the UK/Ireland • Median age of presentation 1.3yr (UK born), 8.1yrs (abroad) • Median duration of follow up 11yr and 5.3yrs
Case Distribution within UK & Ireland 2% Scotland 12% Rest of England 8% Ireland 78%London
Presentation and “ Late presenters ” • 110 (22%) presented age 10+ • 14% with AIDS • 43% mild symptoms CDC A/B • 42% post diagnosis of family member • 2 teenage pregnancies at antenatal screening Screen all siblings / offspring even the well teenagers
Disease Progression 9 young people died after their 10th birthday; 7 attributable to HIV, one to ARVs.
ART history * * 2 received ZDV monotherapy in pregnancy
ARVs • Median length on ARVs 4.5yrs (IQR 2.3-7.0) • 78% NNRTIs • 63% PIs • 45% Triple class experienced • 16% stopped ARVs: STI, poor adherence, refusal
Immunology and virology At latest follow up 55 (11%) have CD4 counts <200, 74% on HAART
Resistance (Toxicity 2008) • 120 (25%) young people ; total 216 assays • 23 prior to HAART start: 2 had baseline NRTI mutations • 97 had assays after HAART start -median 3yrs after start -85 triple class experienced • 17 dual class resistance • 42 triple class resistance 8.6% of cohort
Transfer to adult care • 67 (14%) transferred median age 17.0 yrs (15.2-20.7) • Median duration of follow up 10 yrs (IQR 6.2-14.9) • 40% have had an AIDS diagnosis • 48% triple class experienced, 13% naive • On HAART 52% had VL <400 c/ml, median CD4 296 • Resistance (n=23): 8 dual, 4 triple class • 25% CD4 <200 c/ml
Planning service provision • Almost half of children in the CHIPS cohort have survived to adolescence • BUT -1/3 have had an AIDS diagnosis -1/3 are triple class experienced -1/3 on HAART have detectable VL • HOWEVER -1/5 are treatment naive -1/5 are already with you
Acknowledgements We would like to thank the staff, families and infants from the 52 CHIPS centres CHIPS Steering Committee: Karina Butler, Katja Doerholt, David Dunn, Trinh Duong, Di Gibb, Hermione Lyall, Janet Masters, Vas Novelli, Catherine Peckham, Andrew Riordan, Mike Sharland, Pat Tookey, Gillian Wait, Gareth Tudor-Williams National Study of HIV in Pregnancy and Childhood, Institute of Child Health, London: Pat Tookey, Janet Masters, Catherine Peckham Medical Research Council Clinical Trials Unit: Di Gibb, Trinh Duong, Debbie Johnson, David Dunn, Katja Doerholt, Gill Wait, Sarah Walker We also thank the Department of Health, UK for all their support. CHIPS receives also support from Bristol Myers Squibb, Boehringer-Ingelheim, GlaxoSmithKline, Roche and Abbott & Gilead
Coming to a Clinic near You Be very afraid ADULTS only THE ADOLESCENTS Deeply disillusioned. Complex Multidisciplinary needs. Pampered by paediatricians. Extreme attitude. Resistant virus. ‘In clinic no-one can hear you scream’.