Untested children of HIV-positive mothers, and undiagnosed adolescents, 'a massive issue' at UK conference

The majority of children of immigrant HIV-positive women attending a UK HIV clinic remain untested for HIV, despite a high risk of their being HIV-positive, according to the results of a re-audit presented at the CHIVA parallel sessions of the BHIVA Autumn Conference held in London last week.

Untested children, and the issue of late presentation and delayed diagnosis of a “small but significant number” of vertically infected adolescents who have survived childhood undiagnosed and untreated, will be discussed at a BHIVA/CHIVA consensus conference this December.

The issue of late diagnosis in adults has long been cause for concern in the UK. One of the results of this concern has been the issuance of new guidelines recommending the normalisation of HIV testing in a wide range of healthcare settings.

However, following the recent death of an adolescent in London whose HIV status was missed during childhood, and who presented with TB and died soon after being diagnosed HIV-positive, the issue of late diagnosis and untested children of HIV-positive parents was brought into the spotlight at the British HIV Association (BHIVA) Spring Conference, held in Belfast earlier this year, when Dr Katia Prime of St George’s Hospital in south London first presented the results of a national study of late presentation of adolescents vertically infected with HIV.

Late presentation and diagnosis of vertically infected adolescents

At the Children's HIV Association (CHIVA) parallel sessions, Dr Prime presented updated data suggesting that a “small but significant number of vertically infected adolescents” are surviving childhood, presenting late, and then having their diagnosis delayed either due to missed symptoms, or because their parents or doctors do not perceive them to be at risk for HIV.

Using both paediatric (National Study of HIV in Pregnancy and Childhood/Collaborative HIV Paediatric Study) and adult (Health Protection Agency) surveillance data, cross-checked for duplication, Dr Prime and her colleagues identified 42 adolescents aged between 13 and 20 who had acquired HIV vertically (also known as mother-to-baby transmission), survived childhood untested and untreated, and who had presented to healthcare providers in the UK and Ireland up to the end of 2007.

The median age of these remarkable adolescents was 14 years (range 13-20). Just over half (55%) were female and 95% were Black African (the remaining 5% being described as “mixed Black African”). The majority (86%) were born in sub-Saharan Africa, with the median age of arrival in the UK being 12 years (range 1-16 years). The median interval between arrival and diagnosis was 2.8 years (range 0-13 years), with 30% being diagnosed more than five years after arrival in UK. The remaining 14% were born in the UK.

Although 50% had symptoms at the time of diagnosis prompting an HIV test, the remaining 50% were asymptomatic and were prompted to test following the diagnosis of a relative. The median CD4 count was 210 cells/mm³ (range 0-689), although almost half were diagnosed with a CD4 count below 200 cells/mm³ and 20% had an AIDS-defining illness at diagnosis

Dr Prime also presented data showing delays between presentation and diagnosis. Although 57% were diagnosed the first time they presented to medical services in the UK and Ireland (paediatric or adult HIV services, GPs or A&E), the median interval between presentation and diagnosis was six months, with 27% taking a year. “More worryingly”, noted Dr Prime, a further 17% took more than a year to be diagnosed, ranging from just over one year to seven years between first presentation and diagnosis.

Follow-up data on these adolescents suggest that most are doing well, with 32 on treatment. Of the ten not on treatment, nine have CD4 counts above 250 cells/mm³. However, one adolescent, who presented with TB co-infection, died shortly after being diagnosed with HIV.

During the discussion that followed, Dr Justin Daniels, of North Middlesex University Hospital, revealed that it was at his hospital where the death had occurred, and noted that this was because “the family refused to have their child tested” and said it was “a massive issue”.

“It can be really difficult when you’re seeing HIV-positive mothers to encourage them to test their children, particularly when their mothers haven’t disclosed their HIV status to their children.” replied Dr Prime.

Are children of HIV-positive adults being tested?

A presentation from Dr Michael Eisenhut of Luton and Dunstable Hospital highlighted that at this HIV clinic, the majority of children of HIV-positive mothers do remain untested, despite the clinic’s best efforts.

Dr Eisenhut has previously published the results of an audit to determine whether HIV-positive mothers knew the HIV status of their children, in the April 2008 edition of HIV Medicine.

Of 254 women with children attending the clinic, 143 had a total of 217 children aged 16 years or younger. Of those children, 118 lived in the UK but only a minority of mothers knew the children's HIV status (49, or 42%), of whom nine (18%) were HIV-positive.

Mothers of the 99 children living abroad (71% in Zimbabwe, 21% in other African countries and 5% in Jamaica and other Caribbean countries) were even less likely to be aware of their children’s HIV status – the status of just nine children was known, and four of these were HIV-positive.

Since the audit found that mothers of children who were not tested had chosen not to take up a previous offer of having them tested, Dr Eisenhut and his colleagues undertook a re-audit, focusing on 62 mothers of 79 previously untested children – 32 of these children were in the UK and 43 remained in their country of origin.

They found that ten mothers had arranged for a total of thirteen children to be tested since the last audit (seven in the UK and six abroad) and one child in the UK had been found to be HIV-positive.

When they asked the remaining 52 mothers why they had not tested their children, the most common response (83%) was the belief that the child’s physical wellbeing implied that the child could not be infected.

Other responses (there could be more than one reason) included:

• an inability to cope with a positive diagnosis in a child (42%)
• fear of confronting the child with the mother’s diagnosis (42%)
• fear of feeling guilty if a child was HIV-positive (38.5%)
• fear of disclosure by children to others (38.5%)

Of the 33 mothers with untested children living abroad, additional reasons included:

• fear of disclosure to relatives who would have to arrange the testing (48.5%)
• cost of testing abroad (45%)
• lack of testing facility abroad (39%)

Dr Eisenhut concluded that despite appropriate counselling and a focus on the importance of testing potentially infected children, the majority of children of HIV-positive mothers remained untested. He noted that the main barriers to testing included a perception of HIV infection as a symptomatic and stigmatising illness, a fear of disclosure, and the lack of affordable access to testing in African countries.

'Don’t forget the children'

A discussion ensued following both these presentations regarding the ethics of testing teenagers without disclosing why they were being tested (in order to avoid breaching the mother’s confidentiality); the legal impact of not testing, or not disclosing, if a teenager consequently transmits HIV sexually; the possibility that some assumed vertical infections may be due to childhood sexual abuse by a family member; and the possible use of the child protection framework to force testing when parents are unwilling.

The recent HIV testing guidelines have begun to address some of these issues – notably stating that if a parent does not want the child to be tested, consent issues are complex, but “the overriding consideration must be the best interests of the child”.

However, further guidance will be produced following a one-day national conference, ‘Don’t forget the children’. The conference organisers, BHIVA and CHIVA, hope to bring together relevant groups and stakeholders to understand the extent of the problem, its underlying causes and consequences, and develop a consensus strategy to overcome barriers to testing and diagnosis.

The conference will take place on Wednesday 10^th December 2008 at the Royal Society of Medicine in London. Further details can be found on the CHIVA website.