C Foster, A Judd, H Lyall, T Dunn, K Doerholt, P Tookey, D Gibb

For

Young people with perinatally acquired HIV: a Transitioning UK cohort.

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

78%London

2%Scotland

12%Rest of

England8%Ireland

Case Distribution within UK & Ireland

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

010203040506070

No.

of

chil

dre

n137 (28%) have ever had an AIDS diagnosis

Disease Progression

9 young people died after their 10th birthday; 7 attributable to HIV, one to ARVs.

ART history

Naive19% (n=97)

Did not start HAART(n=17)

Started HAART(n=136)

Started on mono/dual (n=153)

Started on HAART (n=239)

Started ART(n=392)

Total (N=489)

* 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

Median CD4 count (IQR)

HIV VL <400 rna c/ml

HAART start (n=375)235 (94-468)

12% (6-19%)

6 months 427 (250-748) 174 (54%)

12 months 507 (310-766) 156 (51%)

Latest follow up on HAART (n=312) 225 (72%)

ARV Naive (n=97) 461 (338-629) 7 (6%)

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

N=97

Wild type 11

M184I/V 43

NRTI other 59

NNRTI 64

PI major 30

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

•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

Acknowledgements

Coming to a Clinic near Coming to a Clinic near YouYou

Be very afraidBe very afraid

Deeply disillusioned. Complex Multidisciplinary Deeply disillusioned. Complex Multidisciplinary needs.needs.

Pampered by paediatricians. Extreme attitude. Pampered by paediatricians. Extreme attitude. Resistant virus. Resistant virus.

‘‘In clinic no-one can hear you scream’. In clinic no-one can hear you scream’.

ADULTS onlyADULTS only