Children and young people with perinatal HIV in Europe: epidemiological situation in 2014 and implications for the future

Abstract

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.

Cancer in adolescents and young adults living with HIV

“…It was therefore not possible to describe differences in perinatally and horizontally infected AYALHIV. Although paediatric and adult cohorts linking is being developed [19–21], there are only few longitudinal follow up results for cancer risk in children and adolescents transitioning to adult care [22].…”

Using Observational Data to Inform HIV Policy Change for Children and Youth

“…Observational data from clinical care cohorts can fill evidence gaps by providing detailed information on critical outcomes, including age and CD4 at ART start, retention and loss to follow-up, and mortality. 3 , 20 – 22 Such data are particularly valuable for addressing clinical questions that are unlikely to be evaluated in randomized controlled trials and for assessing the real-world impact of implementing new guidelines or interventions.…”