HYPnet Late presentation of vertically transmitted HIV infection in adolescence A Judd 1, R Ferrand 2,3, E Jungmann 2, C Foster 4, H Lyall 4, Brian Rice 5, J Masters 6, Pat Tookey 6, K Prime 7 1 MRC Clinical Trials Unit; 2 Mortimer Market Centre; 3 London School of Hygiene and Tropical Medicine; 4 St Mary’s Hospital; 5 Health Protection Agency; 6 UCL Institute of Child Health; 7 St George’s Hospital, London, UK

HYPnet Background Audit of HIV+ Mother’s attending family clinic, St George’s Hospital 1 –20% of their children in UK untested for HIV –Concerns re disclosure of parental HIV status to children –Child too well or too old Audit of HIV+ Mother’s attending family clinic, Luton & Dunstable Hospital 2 Individual case reports 3 Isolated cases reported via the HIV in Young Persons Network(HYPnet) 1 Hay P, Majewska W, Railton J, Sharland M, Scullard G, Pakianathan M. Poster 14.1/1, EACSC, Warsaw October Eisenhut M, Sharma V, Kawsar M, Balachandran T. HIV Med 2008,9: Español T, Figueras MC, Soriano V et al. Acta Paediatrica 1996; 85:755-7

HYPnet Aim To describe the clinical features and modes of presentation in adolescents with vertically acquired HIV infection diagnosed late (≥13yrs) in the UK or Ireland

HYPnet Methods 1-Inclusion criteria HIV+ve adolescents aged ≥13yrs Diagnosed with HIV in the UK or Ireland by September 2007 Vertically infected

HYPnet Methods 2-Data sources Paediatric surveillance to Sept 2007 –National study of HIV in Pregnancy & Childhood (NSHPC) –Collaborative HIV Paediatric Study (CHIPS) Adult surveillance to December 2005 –New HIV diagnoses (HPA) –Survey of Prevalent HIV Infections Diagnosed (HPA)

HYPnet Methods 3-Data collected Common data set: Demographics HIV diagnosis Delay in HIV diagnosis HAART initiation FU

HYPnet Results 1-Clinical cases CHIPS HPA /1384 (4%) children diagnosed ≥13yrs from CHIPS cohort Vertically Infected Source Unknown Other Routes Vertically infected adolescents ≥13yrs from HPA & SOPHID data, diagnosed in other settings (GP,A&E) and managed in adult HIV clinics Cases Identified

HYPnet Results 2 - Demographics 23 (55%) female 40 (95%) black African 36 (86%) born in sub-Saharan Africa Median age of arrival in the UK or Ireland 12yrs (Range: 1-16yrs) 6 (14%) born in UK

HYPnet Results 3 - HIV diagnosis Reason for HIV test (paediatric only) –HIV symptoms 18/35 (51%) –Asymptomatic 17/35 (49%) Tested following diagnosis of relative Clinical status at diagnosis –AIDS 8/41 (20%) –Non-AIDS 33/41 (80%) Median CD4 count at diagnosis 210 cells/μl (range 0-689) 47% CD4 count <200 cells/μl Median age at diagnosis was 14 yrs (range 13-20yrs) Median interval of 2.8 years (range: 0-13yrs) between arrival in the UK and HIV diagnosis –30% >5yrs after arrival in the UK

HYPnet Results 4 - HIV diagnosis & delay Median interval between presentation to UK medical services and HIV diagnosis 6 months Timen = 30 1 st presentation17 (57%) Within 1yr8 (27%) > 1yr (Range 1-7yrs)5* (17%) *n=3 CD4 <200

HYPnet Results 5 - HAART initiation 34/42 (81%) patients started HAART –88% within 1 yr of diagnosis –12% within 3 yrs of diagnosis 8/42 (19%) patients not started HAART –1 died shortly after diagnosis (CD4=195) –the rest had CD4>250

HYPnet Results 6-Follow up Median duration of FU since HIV diagnosis 2 yrs (range 0-7yrs) 1 patient died of TB co-infection 12 young people in CHIPS have transitioned to adult care

HYPnet Summary Young people with vertically acquired HIV infection are surviving childhood without HAART to be diagnosed in adolescence Delayed diagnosis is not unique to HIV+ adults 20% diagnosis delayed >1yr 20% had advanced disease at diagnosis 50% CD4 <200 cells/μl However 50% were asymptomatic

HYPnet Recommendations Increase HIV diagnosis and reduce delay in diagnosis Avoid late presentation of HIV with advanced disease Allow for appropriate health education Encourage screening of children of HIV+ parents/siblings regardless of age or symptoms

HYPnet

UK National Guidelines for HIV Testing 2008 Appendix 5: Testing infants, children and young people ‘Any infant/child/young person thought to be at significant risk of HIV infection, including all those with parents or siblings who are HIV-infected, should be tested’

HYPnet Acknowledgements CHIPS NSHPC HPA Ali Judd, MRC Clinical Trials Unit Rashida Ferrand, Mortimer Market Centre All centres participating in surveillance

HYPnet Any Questions ?