Children with undiagnosed HIV in the UK and Ireland: are we doing the right thing?

Introduction

Since the introduction of highly active antiretroviral therapy (HAART) to the management of HIV infection, HIV-infected individuals are living longer and their quality of life has improved considerably [1]. Early HIV diagnosis, important for better monitoring of the infection and reduced disease progression has contributed to this increase in life expectancy [1].

The advances in medical research, treatments and management of HIV infection have also benefited the paediatric population. We have witnessed an important shift in the median age of infected children from 7 years old in 1997 to 13 years old in 2005, and the children generally stay in good health. By the end of March 2008, 1460 HIV-infected children living in the UK and Ireland were reported to the Collaborative HIV Paediatric Study (CHIPS) [2]. At the time of writing, 1142 children are alive and currently in follow-up; and 150 adolescents have transferred their HIV care to adult services.

Nevertheless, many children of high-risk population groups living in the UK and Ireland have not yet been tested [3]. The proportion of undiagnosed HIV-infected children is unknown. These children, who can remain asymptomatic for many years, are at significant risk of growth delay, impaired neurocognitive development, advanced disease and death [4]. HIV infection in children can be managed more easily if diagnosed early, ideally within the first years of life. The detection of early clinical signs of disease progression could therefore have a truly positive impact on a child's future.

While most parents with HIV want their children to maintain good health and lead a successful life, a significant number of individuals within high-risk population groups are still reluctant to test their children for HIV.

In 2008, a 10-year-old child died in hospital as a result of HIV-related complications that could have been prevented. Both parents were known to be infected with HIV and were accessing care at the same hospital the child was admitted to after becoming acutely unwell. Unfortunately, the parents omitted to disclose their HIV status to the paediatric team, which delayed the medical diagnosis and led to the child's tragic death.

In an attempt to raise awareness amongst healthcare professionals directly and indirectly involved in the care of HIV-positive patients, this article analyses the issues related to testing children for HIV in the UK and Ireland. It reflects on current practices and identifies ways of managing challenging situations when dealing with testing the children of parents with unknown or HIV-positive status.

Following the success of the introduction of antenatal 'opt-out' HIV testing and the implementation of national preventative measures of mother-to-child transmission (MTCT), the incidence of newly infected babies has significantly decreased in a number of European countries. The risk of MTCT is now less than 1% [5]. An audit conducted by Pat Tookey between 2002 and 2005 in the UK and Ireland identified 87 HIV-positive newborn babies. Of these infected children, 54 were born to undiagnosed mothers who had either declined antenatal testing or seroconverted during pregnancy [6]. Prolonged breastfeeding was also an important risk factor for MTCT when maternal HIV status was unknown [5,6]. Last year, the British HIV Association published new recommendations to tackle the issue of women's refusal for antenatal HIV testing [5]. Testing the partner of pregnant women for HIV was also strongly suggested.

According to the Health Protection Agency's latest report (2008), an estimated 77,400 adults were living with HIV in the UK at the end of 2007, with a steady increase of HIV transmission amongst heterosexuals, especially within the black ethnic community [7,8]. Over a quarter (28%) were unaware of their infection, consequently putting their potential offspring at risk of contracting HIV or becoming unwell [7].

Increasing the uptake of adult HIV testing in high clinical risk populations is paramount in order to identify children at potential risk of perinatal infection. Since the publication of the UK National Guidelines for HIV Testing 2008 [9], several audits focusing on HIV testing in the adult population, were conducted in the UK and presented at the 15th Annual British HIV Association Conference in 2009. Access to HIV testing and care, delay in test results, and psychosocial circumstances are important issues preventing individuals from undertaking an HIV test [10-12].

UNAIDS has expressed increasing concern about the impact that new legislation on criminalisation and HIV transmission could have on public health [13]. It is generally believed that the criminalisation of HIV transmission could lead to the decline of HIV testing uptake amongst high-risk population groups. This increases stigma against people living with HIV who, in turn, feel less inclined to discuss their HIV status with sexual partners [13]. The consequences of this recent legislation could particularly affect adolescents with known HIV-positive status, who are more likely to practise high-risk behaviours during sexual intercourse with casual partners and fail to discuss their HIV status [14].

HIV-infected children are surviving from childhood to adulthood with or without HAART. Recent findings from Prime et al. identified 38 adolescents diagnosed with HIV to the end of 2005. They were all 13 years of age and above with a median CD4 cell count below 250 cells/[mm.sup.3] [15]. These children contracted HIV perinatally and survived through childhood to adolescence with no symptoms: 11 of 38 infected adolescents developed an AIDS-defining illness before, or within 2 years, of diagnosis; and 32 of 38 started antiretroviral therapy (HAART) within 1 year of their HIV diagnosis. HIV-infected adolescents are facing new challenges including evolving medical, social and psychological needs [16].

The UK Guidelines on HIV Testing 2008 [9] have reiterated the importance of testing children of HIV-infected parents regardless of parental gender, age, sexual orientation, and child's age. Asghar et al. recently presented interesting data [17]. They audited 542 case notes at an adult HIV specialist centre in London. The study demonstrated that healthcare professionals failed to record any discussion or inquiry about existing children of infected individuals attending the unit in almost half of the cases reviewed [17-19]. In total, 125 children were identified who had not been tested. The conclusion from this is clearly alarming and could be one of the reasons why children in the UK remain undiagnosed. A national survey would be necessary in order to provide evidence on the extent of the problem in the UK and Ireland.

Healthcare professionals involved in the care of current and newly diagnosed HIV-positive adults should really consider asking questions about existing children living within or outside the UK. This crucial information can be recorded and discussion about the need for testing the child initiated. Where specialist services are available, referrals should be considered when dealing with more complex situations. The main objective is to keep the family engaged with specialist services in order to reach a final agreement on testing the child for HIV.

A local audit targeted 324 medical practitioners in a wide range of medical settings in a UK teaching hospital [10]. Mitchell and co-workers highlighted the poor knowledge of existing HIV testing guidelines in 67% of respondents and only 36% of the practitioners felt confident with the HIV testing process. The majority of doctors (57.5%) underestimated the extent of undiagnosed HIV in the UK and Ireland and 60% had concerns around pre-test discussions. This emphasises the importance of education and regular training updates on HIV for healthcare practitioners.

In general, testing children for HIV is relatively straightforward. This is a good opportunity to encourage open discussions about the presence of HIV-positive members within the family and share any concerns within a controlled environment. However, a number of HIV-infected parents do not want to think, or have never thought, about testing their children for HIV. These families usually believe that not testing their children is the best way to protect them or prevent them from getting upset.

Eisenhut [20] presented results from an audit highlighting difficult issues and misconceptions that families encounter when considering testing their child for HIV. From the asymptomatic child to the fear of parental disclosure to the child, many parents underestimated the potential risk for the chid to be infected or to become acutely unwell. Most HIV-infected women who took part in the audit believed that their children were unlikely to be infected as they never experienced any health issues. Stigma, guilt and fear of isolation were also reasons amongst parents' responses.

The father of an HIV-positive teenager who was diagnosed many years ago once told me:

   I know I should really consider testing my two
   younger daughters but I do not feel strong
   enough to face the same stress and fears of
   having to cope with another HIV-positive child.

This father has not yet tested for HIV and his positive partner does not access any HIV care.

In practice, the fear of having to deal with a new diagnosis and the concerns that emerge from the disclosure of parental infection, as the child gets older, are well established reasons for not testing. Regardless of the medical setting, healthcare professionals need to be confident to approach and reassure families. In situations of parental refusal, negotiation between the two parties should lead to the child being tested, taking into consideration individual medical and psychosocial circumstances.

   I am reluctant to test my child as I am worried
   my wife will take my child and leave me if
   the test comes back positive.

Healthcare professionals need to be sensitive to the impact a child's positive result could have on family dynamics, particularly if parents are unaware of their own HIV status. Indeed, parents may question the integrity of their relationship and the mother could also be at risk of being rejected by her extended family. A mother with two children seen in clinic once admitted:

   I cannot disclose my HIV diagnosis as my
   family will think I am a prostitute because I
   have HIV.

Another mother of two older children recently tested positive for HIV following her husband's new diagnosis. As well as dealing with, and accepting, her positive result, the family is facing stress and anxiety whilst the children are in the process of being tested. During one of the multiple sessions with the psychologist, the mother said to her husband:

   I trust myself but I don't trust you any more.
   From now on, I know that I am only living for
   my daughters.

These situations remain an exception and give us an idea of how complex testing children for HIV can sometimes be. Appropriate referral to specialised paediatric HIV services, where available, is recommended in these unusual situations.

HIV in children is a preventable disease and HIV-related complications can be avoided as long as families in high-risk population groups are identified and diagnosed early. Therefore, healthcare professionals working with adults in HIV and non-HIV care settings across the UK and Ireland should strongly consider discussing and performing HIV testing. Discussions about the HIV status of existing children are crucial and will enable identification of those who remain undiagnosed. Appropriate referral to paediatric services is recommended.

The Children's HIV Association (CHIVA) is currently updating national guidelines to support any healthcare professionals working with adults or children in primary, secondary and tertiary care settings with the process of testing children for HIV [21].

The UK National Guidelines for HIV Testing 2008 [9] reinforce the fact that:

   It is within the competence of all clinicians and
   appropriately trained healthcare workers to
   obtain consent and perform an HIV test. There
   is no need for special counselling skills beyond
   those required for routine clinical practice.

References

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Correspondence to: Djamel Hamadache, Paediatric Outpatients Department, Chelsea and Westminster Hospital, 369 Fulham Road, London SW10 9NH. (email: [e-mail])

Djamel Hamadache

Paediatric HIV Nurse Specialist, Chelsea and Westminster Hospital, London