Young Persons (YP) leaving CHIPS are lost to follow up - What to do next?

1. Adolescents in CHIPS - linking to CHIC Young Persons (YP) leaving CHIPS are lost to follow up - What to do next? Katja Doerholton behalf of CHIPS NSHPC HYPNET CHIC

2. Introduction to CHIPS & NSHPC • Surveillance of obstetric and paediatric HIV in the UK and Ireland through the National Study of HIV in Pregnancy and Childhood (NSHPC) • CHIPS is a multicentre cohort study of HIV infected children under care in 56 hospitals in the UK & Ireland • 85% children currently reported to the NSHPC are also in CHIPS follow up • Prospective data collected annually • Clinical progression, VL, CD4, growth, LDS, ART, side effects

3. Introduction to the UK Collaborative HIV Cohort Study (UK CHIC) • Collaboration of HIV clinics in the UK • Most London centres, excluding St. Thomas, St. George‘s & Newham • Outside London centres are Brighton & Edinburgh • Aims • To monitor changes in deaths and AIDS over time • Uptake & response to HAART • Laboratory toxicity data

4. Leaving Paediatric CareCHIPS Age group by year of follow up

5. 3% Scotland 0% N. Ireland 19% Rest of England 9% Ireland <1% Wales 69% London Distribution of ≥14 years of age in CHIPS Total n= 258

6. Leaving Paediatric Care • 1,043 children/YP in current CHIPS follow up • 50% of the cohort ≥10 years • 258 (25%) are ≥ 14 years • 114 have already been transferred to adult care since the start of CHIPS • 55 (48%) stayed at the same adult centre

7. Linking CHIPS CHIC • 114 YP transfered from CHIPS to adult care of which only 40% in current CHIC follows up • BUT! around 60% of YP are not matched and lost to follow up • CHIC data are more limited • no growth, no clinical LDS or clinical adverse event data available • Additional problem • Mobile population, YP move around the country as they grow up, i.e. travelling abroad, going to university/college

8. Teenagers with late presentation of vertically-acquired HIV infection in UK Rashida Ferrand, Katia Prime, Caroline Foster, Eva Jungman • CHIPS/NSHPC and HPA data • Describe 38 YP diagnosed ≥13 years • 30% developed AIDS • 60% required ART shortly after diagnosis • Delay in diagnosis • What impact has this on clinical outcome • STI and ongoing transmission NEED for AWARENESS of LATE PRESENTATION

9. YP cohortsUp and running projects • Swiss and Dutch YP are followed in the same adult database • BUT small numbers in both countries • US are developing a cohort of vertically infected YP • Very detailed studies on growth, drug related adverse events, aim of enroling 600 HIV+ YP • Mulago Hospital, Uganda • Follow up of YP with an already existing adolescent cohort

10. First „brainstorming“ between CHIPS/NSHPC CHIC HYPNET July 07 Conclusions from the first meeting • To continue follow up of this unique cohort with available clinical and treatment history • Need for rapid action and development of a YP cohort • CHIPS should take the lead

11. Aims of the YP cohort • Evaluate effects of perinatally acquired HIV in YP • Including growth, sexual maturation • Response and use of combination ART • Describe long term complications of HIV and ART including drug toxicity • Hyperlipidaemia and Lypodystrophy, Hyperglycaemia • Cardiovascular events/changes, Hypertension • Effects on bone metabolism (biochemistry, and other locally available data)

12. Aims of the YP cohort • Early talks about collaborations with other similar cohort studies • Africa, Europe and the US • Further collaborations with other non HIV cohort studies to help identify effect of HIV/ART

13. Next Step 2nd CHIPS/NSHPC CHIC HYPNET meeting • To discuss aims and data collection in more detail • Funding, application for grants etc. • Suggestions, ideas welcome!!!

14. Acknowledgements Thanks to everyone providing data to the NSHPC and CHIPS !! Republic of Ireland:Our Lady's Children’s Hospital Crumlin, Dublin: K Butler, A Walsh. UK: Birmingham Heartlands Hospital, Birmingham: Y Heath, J Sills; BlackpoolVictoria Hospital, Blackpool: N Laycock; Bristol Royal Hospital for Children, Bristol: A Finn, A Foot,L Hutchison; Central Middlesex Hospital, London: M Le Provost, A Williams; Chase Farm Hospital, Middlesex; Chelsea and Westminster Hospital, London: D Hamadache, EGH Lyall, P Seery; Ealing Hospital, Middlesex: V Shah, KSloper; GlasgowRoyal Hospital for Sick Children, Glasgow: C Doherty, R Hague; Great Ormond St Hospital for Children, London: M Clapson, S Fasolo, J Flynn, DM Gibb, N Klein, K Moshal, V Novelli, D Shingadia; Hillingdon Hospital, London; Homerton University Hospital, London: D Gurtin; John Radcliffe Hospital, Oxford: A Pollard, S Segal; King's College Hospital, London: C Ball, S Hawkins, D Nayagam; Leeds General Infirmary, Leeds: P Chetcuti; Leicester Royal Infirmary, Leicester: M Green, J Houghton; Luton and Dunstable Hospital, Luton: M Connan, M Eisenhut; Mayday University Hospital, Croydon: J Baverstock, J Handforth; Milton Keynes General Hospital, Milton Keynes: PK Roy; Newcastle General Hospital, Newcastle: J Clarke, K Doerholt, C Waruiru; Newham General Hospital, London: C Donoghue, E Cooper, S Liebeschuetz, S Wong; Ninewells Hospital and Medical School, Dundee: T Lornie; North Manchester General Hospital, Manchester: C Murphy, T Tan;North Middlesex Hospital, London: J Daniels, EGH Lyall, B Sampson-Davis;Northampton General Hospital, Northampton: F Thompson; Northwick Park Hospital, Middlesex; M Le Provost, A Williams; Nottingham City Hospital, Nottingham: D Curnock, A Smyth, M Yanney; Queen Elizabeth Hospital, Woolwich: W Faulknall, S Mitchell; Royal Belfast Hospital for Sick Children, Belfast: S Christie; Royal Edinburgh Hospital for Sick Children, Edinburgh: J Mok; Royal Free Hospital, London: S McKenna, V Van Someren; Royal Liverpool Children’s Hospital, Liverpool: C Benson, A Riordan; Royal London Hospital, London: B Ramaboea, A Riddell; Royal Preston Hospital, Preston: AN Campbell; Sheffield Children's Hospital, Sheffield: J Hobbs, F Shackley; St George's Hospital, London: R Chakraborty, S Donaghy, R Fluke, M Sharland,S Storey, C Wells; St Mary's Hospital, London: D Hamadache, C Hanley, EGH Lyall, G Tudor-Williams, C Walsh, S Walters; St Thomas' Hospital, London: R Cross, G Du Mont, E Menson; University Hospital Lewisham, London: D Scott, J Stroobant; University Hospital of North Staffordshire, Stoke On Trent: P McMaster; University Hospital of Wales, Cardiff: B O' Hare; Wexham Park, Slough: R Jones; Whipps Cross Hospital, London: K Gardiner; Whittington Hospital, London. Funding: NSHPC is funded by the Health Protection Agency, and has also received support from the UK Department of Health and the Medical Research Council. CHIPS is funded by the Department of Health and in the past received additional support from Bristol-Myers Squibb, Boehringer Ingelheim, GlaxoSmithKline, Roche, Abbott, and Gilead. Committees and participants (in alphabetical order): CHIPS Steering Committee: K Butler, K Doerholt, S Donaghy, DT Dunn, T Duong, DM Gibb, A Judd, EGH Lyall, J Masters, E Menson, V Novelli, C Peckham, A Riordan, M Sharland, D Shingadia, PA Tookey, G Tudor-Williams, G Wait MRC Clinical Trials Unit: DT Dunn, T Duong, L Farrelly, DM Gibb, D Johnson, A Judd, G Wait, AS Walker National Study of HIV in Pregnancy & Childhood, Institute of Child Health: J Masters, C Peckham, PA Tookey