Testing children in UK: progress made, but more work needed for older children and those living abroad

Efforts to improve the detection of HIV infection in children born to HIV-positive patients were reported in a series of posters at the joint conference of the British HIV Association (BHIVA) and the British Association of Sexual Health and HIV (BASHH) last week. Taken together, the studies give a sense of the scale of the problem and make it clear that there are particular challenges in ensuring that older children and those living abroad are tested for HIV.

Over the last two years, attention has been given to the issue of undiagnosed infection in children born to HIV-positive parents, with a consensus emerging that all HIV services needed to put into place robust systems for identifying and testing the children of all adults attending their services.

Moreover, the significance of the issue was highlighted by a poster at the conference which confirmed that a number of individuals who acquire HIV from mother-to-child transmission survive through adolescence into adulthood.

This poster reported on the separate cases of two adults, both most probably vertically infected in Uganda, who were both diagnosed with HIV in London when aged 20. Both had developed behavioural changes in previous years, but these were attributed to difficult adolescences, and both were subsequently diagnosed with HIV-associated neurocognitive disorders as well as other physical health problems. One presented with a CD4 count of 211 cells/mm³ and the other presented with 17 cells/mm³ and subsequently died.

Turning to the series of posters describing efforts to monitor and improve the testing of children, some of the posters described audits of past practice, while others covered the outcomes of new efforts to ask patients about the issue or to follow up children for testing.

Whereas some clinics chose only to explore the issue in terms of their female patients, others asked all their adult patients if they had children. An audit of past practice by Manchester Royal Infirmary drew attention to this issue. They found that whereas 95% of female patients had been asked about children, only 70% of heterosexual or bisexual men had been questioned on the topic.

Moreover, although the clinic was aware of a number of gay male patients having sexual relations with women, only 3% of gay men had been asked about having children.

From clinic to clinic, the proportion of patients found to have children naturally varied according to the mix of patients and whether women only were asked.

At St George’s and two associated clinics in south London, 78% of female patients had children, with 473 mothers reporting a total of 1092 children. At Newham University Hospital (east London), where both men and women were questioned, 531 patients had a total of 878 children.

At the Mortimer Market Centre, a central London clinic with a greater proportion of gay patients, one in five patients had a child, with 360 adults having a total of 750 children.

How many children were reported to have been tested? A range of figures were given, often in the range of 50 to 70%.

For example, at St George’s, 60% of children had been tested and in Newham, 55% of the children aged 21 or under had been tested. A study from Norwich reported that although 92% of the children had had a paediatric assessment at the same hospital, only 53% had HIV status recorded in the mother’s medical notes.

The highest reported figure for testing of children (although these only relate to UK resident children) was 92% at the Mortimer Market Centre.

Three of the studies reported on the proportion of the patients’ children who were living in the UK, and in each case it was between 60% and 69%. The majority of children living elsewhere were resident in African countries.

Moreover, it was a consistent finding that children living outside the UK were less likely to have been tested for HIV than those in the UK.

For example, in Newham, 33% of children living abroad had been tested whereas 68% of UK-resident children had been (a statistically significant difference). At St George’s, the corresponding figures were 27% and 70% respectively.

It is likely that poor access to HIV treatment and testing services, as well as stigma, contribute to the lower rates of testing in African-resident children.

One poster noted that although clinicians enquired about children living abroad and recommended that they seek testing, this was rarely followed up later. Moreover, children currently living abroad may move to the UK in the future, suggesting that enquiring about children abroad may need to be an ongoing process, rather than a one-off event.

Age was also consistently found to affect the uptake of testing. Whereas younger children may sometimes be tested without them understanding the nature of the test, disclosure of the parent’s HIV status will usually occur if an older child or adolescent tests.

Moreover, the parent may believe that a child who has lived for a number of years must be HIV-negative.

At St George’s, 74% of children aged 18 or over were untested, in contrast to 26% of those under 18. At the Mortimer Market, where testing rates are high, the median age of a child needing testing is 22. Two thirds of those who need to be tested are aged 15 or over.

However, a number of studies only considered the number of children needing testing who were under a certain age (for example 18 or 21). On the other hand, adolescents and young adults who remain untested are of significant concern as they are likely to have sexual relations and may pass HIV on to a sexual partner or to a baby.

Although a majority of parents were of black African ethnicity in all the studies, some parents were of other ethnicities. The St George’s study looked at whether testing rates varied according to ethnicity, and found that it did not.

Finally, a team from St Mary’s in London presented results from a new service offering point-of-care (rapid) tests to children. While families said that the testing of children was highly stressful, the ability to have same-day results made the process more acceptable.