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BHIVA / CHIVA Consensus Conference: ‘Don’t Forget the Children’ 10 December 2008, Royal Society of Medicine The UK epidemiology of undiagnosed HIV infection in children. National Study of HIV in Pregnancy and Childhood. Pat Tookey UCL Institute of Child Health. NSHPC.
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BHIVA / CHIVA Consensus Conference: ‘Don’t Forget the Children’10 December 2008, Royal Society of MedicineThe UK epidemiology of undiagnosed HIV infection in children National Study of HIV in Pregnancy and Childhood Pat Tookey UCL Institute of Child Health NSHPC
How do we assess how many untested children of positive parents are in the UK? • How many of them are likely to be infected?
Background – antenatal testing and diagnosis • Antenatal testing for HIV infection offered selectively, if at all, throughout most of the 1990s • Most infected pregnant women remained undiagnosed, and sick infant or child was often the first family member diagnosed • Pre-delivery detection rates rose from about 20% overall in 1993 to about 60% in 1999 • Routine antenatal HIV test introduced from 2000 • Uptake of testing and interventions high, detection rates now over 90% • National Guidelines for HIV Testing 2008 • will be covered in later presentation
HIV prevalence among pregnant women 1995-2007 Unlinked anonymous survey of newborn infant dried blood spots (represents maternal HIV status), adapted from HPA Report 2008
Background – diagnosis of infected children • Infants born to women diagnosed before or during pregnancy are tested soon after birth • In recent years >98% are not infected • What happens to their older siblings? • About 15-30% of children born to undiagnosed women are infected • Young children of newly diagnosed women are likely to be tested (clinicians / parents aware) • What happens to their older children? • Assumed if they are healthy probably not infected?
Background – diagnosis of infected children • Untreated HIV in vertically infected children • Most children likely to develop symptoms by age 5, but • Up to 10% of children surviving to age 10 might be symptom-free • Diagnosis in later childhood / adolescence • recent data from UK / Ireland suggests about 50% of vertically infected young people diagnosed at 13 or over were symptom-free Judd et al, HIV Medicine in press 2008, later presentation (K Prime)
Who are the potentially undiagnosed children? • Children of diagnosed women & men • Siblings of diagnosed children and young people • Children born abroad, now living here • Unaccompanied children • Looked after children • Children of UK residents who are living abroad • Children of undiagnosed parents • Children with non-vertically acquired infection
UK estimates for 2007 • About 77,400 people living with HIV • 73,300 aged 15-59 years • 72% aware of their infection • 28% (21,000) not aware • About 7,700 individuals newly diagnosed in 2007 • 55% (4,260) acquired infection heterosexually • 40% (2,580) through sex between men
Annual survey of HIV-infected persons (aged 15-59 years) accessing care (SOPHID) HPA Annual Report 2008 56,600 people accessed HIV care in 2007
How many HIV-infected adults have children? • Probably different in different groups • Men who have sex with men (MSM) • Heterosexual men • Women • Higher fertility in some minority ethnic groups • Little information available for UK • Luton data to be presented Eisenhut et al, HIV Medicine 2008, later presentation
Timing of adult’s acquisition of infection • Relevant for partner tracing and for testing children • Does an adult with HIV have children? • How old are their children? • Does the adult have recent or long-standing infection? • Be aware of possible seroconversion in late pregnancy or after delivery
Timing of adult’s acquisition of infection • Long period without symptoms in infected adults: typically 8-11 years between infection and onset of symptoms • Current diagnostic tests do not distinguish recently acquired (incident infections) from long standing infections • HPA currently rolling out STARHS testing of all newly diagnosed cases of HIV to identify recent infections • Late diagnosis – people with a CD4 count <200 within 3 months of diagnosis Serological Testing Algorithm for Recent HIV Seroconversion
Births to HIV infected women in the UK, 2007 • Estimated total UK births in 2007: 772,000 • 1230 pregnant women with diagnosed HIV are known to have given birth in 2007 • About 1% of their infants likely to be infected • 70-120 undiagnosed women probably gave birth in 2007 • ~30% of their infants likely to be infected
How many diagnosed children in the UK? • About 1700 diagnosed under age 16 to date • 95% vertically infected (over 1600) • Just under 50% were born abroad • About 1,000 under-16s had HIV care in 2007 • About 80 children were newly diagnosed in 2007 • >60% were born abroad • Children born in the UK are diagnosed at younger median age than those born abroad • Some children diagnosed in UK may have had symptoms or been diagnosed at an earlier age before arrival in UK
Age at diagnosis: children diagnosed since 2000 in the UK, reported to NSHPC by September 2008
Age at diagnosis: children diagnosed since 2000 in the UK, reported to NSHPC by September 2008
Age at diagnosis of 203 infected infants born since 2000 in the UK to undiagnosed mothers, reported by September 2008
Audit of perinatal transmissions, England 2002-2005 • 30% born to diagnosed women • but no transmissions occurred with optimal care and undetectable viral load at delivery • concurrent infections or conditions in pregnancy • late diagnosis and/or premature delivery • 70% born to undiagnosed women • Antenatal testing not offered, or declined in some cases • Seroconversion in pregnancy (minimum estimate 15%) • Some seroconversions / transmissions might have been postnatal • Adverse social circumstances in many families NSHPC UCL Institute of Child Health Audit, Information Analysis Unit
Summary • Although UK antenatal detection rates were low in 1990s, prevalence in pregnant women was much lower than now • ~2/10,000 in mid/late 1990s → ~17/10,000 now • Number of undiagnosed infected UK-born children currently aged over 10 likely to be low • Majority of infected children in the UK were born abroad • Diagnosis in older children born abroad is not uncommon • Positive mother / parent / siblings • Test the children
How do we assess how many untested children of positive parents are in the UK? • 73,000 infected adults, 56,000 diagnosed • including about 20,000 women • Substantial numbers of untested children? • How many of them are likely to be infected? • Can’t give overall estimate – more information required
Thanks to • Everyone who reports to the NSHPC and CHIPS, or contributed to the Perinatal HIV Transmission audit • NSHPC team at UCL Institute of Child Health • Colleagues at HPA and CHIPS For obstetric and paediatric HIV data, visit www.nshpc.ucl.ac.uk NSHPC National Study of HIV in Pregnancy and Childhood