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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By: Ali Judd (PENTA-EPPICC), Intira Jeannie Collins (PENTA-EPPICC), Sara Lodi (CASCADE), Ashley Olson (CASCADE), Nikos Pantazis (CASCADE), Julia del Amo (COHERE), Charlotte Duff (PENTA-EPPICC), Anne-Francoise Gennotte (EuroSIDA), Dennis Kristensen (EuroSIDA), Bruno Ledergerber (EuroSIDA), David Nadal (EuroSIDA), Pablo Rojo Conejo (COHERE), Caroline Sabin (COHERE), Yacine Saidi (PENTA-EPPICC), Rikke Salbøl Brandt (COHERE), Monique Termote (COHERE), Claire Thorne (PENTA-EPPICC), Josiane Warszawski (COHERE), Diana M Gibb (PENTA-EPPICC).
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