Global figures

By the end of 2004, it was estimated that more than 2.0 – 2.6 million children worldwide were living with HIV infection.  Between 1700-1800 children under 15 years of age had acquired HIV infection each day, and more than half a million children had died of AIDS during that year. Moreover, estimates suggest that there are at least 14 million children have been orphaned through HIV infection.

Global disparity is evident, with the largest numbers of HIV-positive children reported from developing countries, in particular sub-Saharan Africa and increasingly Asia. The vast majority of children acquire infection through mother-to-child transmission, although child sexual abuse, high-risk behaviours in teenagers, or transmissions due to imperfectly screened blood transfusions still occur

UK figures

Over the last five years the epidemiology of paediatric HIV infection in the United Kingdom (UK) has changed dramatically This is due to a number of factors (for more details see HIV epidemiology).

Firstly, the widespread implementation of interventions to prevent transmission from HIV-positive pregnant women to their newborn babies has resulted in a decrease in mother-to-child transmission.

Secondly, the increase in HIV in immigrants coming from high-prevalence areas has been reflected in an increase in the absolute number of children born with HIV. Whereas this was running at about 60 cases a year between 1992 and 1997, it has increased since then and in the last year for which we have figures available (2003) 120 children were born with HIV.

Thirdly however, the introduction and development of combination antiretroviral therapy to treat HIV infection has considerably increased the life-expectancy of those children who are HIV-infected. This is reflected in the numbers of children surviving childhood and living into adulthood.

Finally, the numbers of children infected via blood products (such as boys with haemophilia) and still living has decreased, with no new reported cases since donor screening and heat treatment of clotting-factor products was implemented in 1985. Moreover, children infected via blood products and presenting to UK centres are often older children who were born and infected in their country of origin.

By December 2004, 1653 HIV-infected children had been reported in the UK (National Study of HIV in Pregnancy and Childhood, data available upon request from nshpc@ich.ucl.ac.uk, tel. 020 7829 8696). About 20% of all infected children ever reported in the UK & Ireland are known to have died, and about 12% have left the country or are otherwise lost to follow up. Around 95% of those living with HIV had acquired infection from their mothers perinatally.

In April 2000 the Collaborative HIV Paediatric Study (CHIPS) was established as a multi-centred cohort study of HIV-infected children in the UK and Ireland. The collaboration is between 25 centres in the UK and Ireland that care for HIV-infected children (many of whom are enrolled in the PENTA network of clinical trials), the National Study of HIV in Pregnancy and Childhood (NSHPC), and the MRC Clinical Trials Unit, London.

This has provided more detailed information about treatment and outcomes, and includes around 80% or so of children living with HIV in the UK/Ireland. Of the 800 living children reported by the end of 2004 40% were over ten years of age, compared with 22% in the year 2000, and 45% were born abroad, the vast majority from sub-Saharan Africa.

In addition to the number of children diagnosed with HIV infection, considerably larger numbers of children have been affected as a result of HIV infection in their parents and siblings. As Lwin and Melvin (2001) suggest this is an important but often neglected group.

This chapter addresses some of the relevant issues for children infected and affected by HIV living in the UK. It includes:

• Medical aspects of care for children infected with HIV.
• Psychological aspects of care for children infected and affected by HIV.
• Social aspects of care for children infected and affected by HIV.
• Medical aspects of caring for children with HIV infection.