Swansea University researchers have led major European study investigating how socio-economic circumstances influence survival among children born with major congenital anomalies.
The team used the SAIL Databank, based at the University, for the research and their findings have just been published in PLOS One.
The research, part of the EUROlinkCAT collaboration, analysed data from more than 47,000 children with major congenital anomalies across ten congenital anomaly registers in seven European countries. By securely linking health and administrative records within each participating country, researchers were able to examine how childhood mortality varies according to socio-economic status while maintaining strict data privacy and governance standards.
The study found that children with major congenital anomalies from the most socio-economically disadvantaged backgrounds were significantly more likely to die than those from the least deprived backgrounds. While disparities were evident during infancy, they became even more pronounced between the ages of one and ten, highlighting the influence of social and economic factors on health outcomes.
Lead author, Professor Sue Jordan 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. Differences were consistent in all comparisons only in Wales and Ukraine – the countries with the lowest GDP per capita. We hope these findings will stimulate examination of resources allocated to children with congenital anomalies living in poverty.”
The research brings together experts from Swansea and Public Health Wales' Congenital Anomaly Register and Information Service (CARIS) with European institutions and health organisations in England, Northern Ireland, Italy, Finland, Ukraine, Malta, Spain and Denmark.
Within Wales, the research was enabled through the SAIL Databank, which is funded by Welsh Government and provides researchers with secure access to anonymised, linkable population-scale data.
SAIL Databank’s Dr Hywel Turner Evans said: “Using data from seven countries in Europe, we found that children with major congenital anomalies faced a higher risk of death if they were from more disadvantaged backgrounds. However, this was not seen in Denmark, suggesting that these inequalities are not unavoidable. Countries that reduce the impact of poverty on child health may offer valuable lessons for policymakers to improve lives elsewhere.”
Across the participating countries, children in the most deprived groups had a 47 per cent higher risk of dying during their first year of life than children in the most affluent groups. Between the ages of one and ten, the differences in chances of dying increased further, with mortality approximately twice as high among the most disadvantaged children.
Although the strength of these associations varied between countries, Wales was among the participating regions where socio-economic disadvantage was consistently associated with higher mortality during both infancy and later childhood.
The researchers also found that children born to non-EU nationals experienced higher mortality in the countries where nationality data were available, while no clear association was identified between maternal marital status and childhood mortality.
The authors say secure linkage of routinely collected health and administrative data provides valuable opportunities to better understand the long-term outcomes of children living with congenital anomalies.