Researchers at Swansea University have led a major European investigation into how poverty and social disadvantage influence survival among children born with major congenital anomalies. The study, published in PLOS One, analysed health and administrative data from more than 47,000 children across ten congenital anomaly registers in seven European countries. Its findings reveal that socio-economic inequality is strongly associated with childhood mortality, particularly after infancy, when children’s health outcomes depend increasingly on ongoing primary, community and social care rather than emergency hospital treatment alone.
The research was conducted through the EUROlinkCAT collaboration, an international programme examining the health and development of children born with congenital anomalies. Congenital anomalies, sometimes called birth defects, are structural or functional abnormalities that develop during pregnancy and are present at birth. They include conditions affecting the heart, brain, spine, limbs, digestive system and other organs. Although advances in surgery, neonatal medicine and long-term care have substantially improved survival, many affected children require repeated medical appointments, specialist treatment, rehabilitation and support throughout childhood.
To investigate whether social circumstances influenced survival, the researchers securely linked congenital anomaly registry information with routinely collected health and administrative records. These records can include hospital admissions, primary-care contacts, mortality data and indicators of socio-economic status. The analysis covered participating regions in Wales, England, Northern Ireland, Italy, Finland, Ukraine, Malta, Spain and Denmark. Because the data were linked within each country under strict privacy and governance arrangements, researchers could study long-term outcomes without exposing individuals’ identities. The approach demonstrates how population-scale data can reveal patterns that would be difficult to detect through individual clinical studies.
The results showed a clear social gradient in mortality. During the first year of life, children with major congenital anomalies from the most socio-economically disadvantaged groups had a 47 per cent higher risk of death than children from the most affluent groups. The disparity became more pronounced between the ages of one and ten, when mortality was approximately twice as high among the most disadvantaged children. In statistical terms, the findings indicate that deprivation was associated with a substantially elevated hazard of death, even though the size and consistency of the association differed between countries and regions.
The researchers suggest that the changing pattern across childhood may provide important clues about how inequality affects health. During infancy, children with severe anomalies often receive intensive and highly specialised treatment in neonatal units, paediatric hospitals and surgical centres. Such services may operate according to national or regional protocols, potentially reducing differences in access during the earliest and most medically urgent period. After the first year, however, care often becomes more dependent on general practitioners, community nurses, therapists, social services and families’ ability to attend appointments and coordinate complex treatment. Housing conditions, transport, household income, health literacy and access to nutritious food may therefore have a stronger influence on outcomes.
Professor Sue Jordan, the study’s lead author, said differences in mortality between rich and poor were greater after the first year of life, when care depends less on acute services and more on primary and community care. She noted that the inequalities were consistently observed across comparisons in Wales and Ukraine, the countries in the study with the lowest gross domestic product per capita. The authors hope the findings will prompt closer examination of the resources available to children with congenital anomalies who are living in poverty, particularly after they leave intensive early-life medical services.
Wales was among the participating regions where socio-economic disadvantage was consistently associated with higher mortality during infancy and later childhood. The Welsh analysis was enabled by the SAIL Databank, based at Swansea University and funded by the Welsh Government. SAIL provides approved researchers with secure access to anonymised, linkable population-scale data. Its architecture allows information from different public-sector sources to be analysed together while maintaining controls over disclosure, access and data governance. For congenital anomaly research, this creates an opportunity to follow children beyond the initial diagnosis and examine outcomes across multiple stages of development.
The international comparison also produced a potentially important exception. The association between deprivation and mortality was not observed in Denmark, suggesting that the inequalities identified in other settings are not inevitable consequences of having a congenital anomaly. The researchers caution that differences in health systems, social protection, data coverage, anomaly profiles and the measurement of deprivation may all contribute to variation between countries. Nevertheless, Denmark’s result raises the possibility that policies reducing the effects of poverty on children’s health, combined with coordinated medical and community care, could offer lessons for other health systems.
The study identified additional social patterns. In countries where nationality information was available, children born to non-European Union nationals experienced higher mortality. The analysis did not find a clear association between maternal marital status and childhood mortality. These findings do not establish that nationality itself causes poorer outcomes; instead, nationality may reflect wider factors such as migration status, language barriers, insecure housing, limited knowledge of health services, financial hardship or difficulties accessing care. The authors emphasise that secure linkage of routinely collected records can help identify such patterns and guide more targeted research into the mechanisms behind them.
Dr Hywel Turner Evans of the SAIL Databank said the findings showed that children with major congenital anomalies faced a higher risk of death when they came from more disadvantaged backgrounds, while the absence of the same pattern in Denmark suggested that these inequalities could be reduced. The researchers argue that improving survival will require more than advances in surgery and hospital medicine. Earlier identification of families needing additional support, better coordination between specialist and community services, and sustained investment in public health and social care may be essential. By bringing together data from several European health systems, the EUROlinkCAT study provides evidence that a child’s social environment can shape survival long after the immediate medical crisis of birth has passed.
Subject of Research: People
Article Title: Mortality amongst European children with congenital anomalies: Associations with socio-economic status in the EUROLINKCAT cohort
Web References: https://doi.org/10.1371/journal.pone.0352025
References: PLOS One, DOI: 10.1371/journal.pone.0352025
Keywords: congenital anomalies, childhood mortality, socio-economic inequality, poverty, EUROlinkCAT, SAIL Databank, Wales, child health, public health, European health data
