Accurate ascertainment of the
number of children living with human immunodeficiency virus (HIV) is important
to plan paediatric and adolescent health services. In Europe, the first
generation of perinatally HIV-infected survivors are transferring to adult care
and their health needs are unknown.
We undertook an online survey of HIV cohort
studies participating in the EuroCoord Network of Excellence to ascertain the
number of perinatally HIV-infected (pHIV) patients included, to compare it with
those published by the European Centre for Disease Prevention and Control
(ECDC) and the World Health Organization (WHO) and to assess the ability of
countries to follow up pHIV patients after transfer to adult care. At the end
of 2013, 16 countries in EuroCoord reported 8,229 pHIV patients in follow-up in
cohorts, compared with 5,160 cumulative diagnoses reported by the ECDC in the
same area. Follow-up of pHIV patients after transfer to adult care varied. It
is likely that the number of diagnoses of perinatal HIV reported to ECDC is an
underestimate, although this varies by country.
Further work is needed to
refine estimates and encourage follow-up in adult HIV cohorts to investigate
long-term outcomes and improve the care of the next generation of children with
HIV.
Below: Number of perinatal patients in HIV cohorts in countries in the EU/EEA area, to end of 2013 (n = 8,229)
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