The healthcare needs of children with Down syndrome in the first year of life: an analysis of the EUROlinkCAT data linkage study

BACKGROUND: Globally, Down syndrome is the most common chromosomal anomaly, often co-occurring with cardiac or gastrointestinal anomalies. There is a lack of robust data on specific healthcare needs of children with Down syndrome compared to children with other major congenital anomalies. OBJECTIVES: o quantify the healthcare needs of children with Down syndrome in the first year of life compared to children with major congenital anomalies in a large population-based cohort across Europe. METHODS: The EUROlinkCAT study was a multicentre data linkage study between congenital anomaly registries in Europe and hospital and mortality databases. Children born between 1st January 1997 and 31st December 2014 were included. Summary statistics were used to compare differences between children (those with Down syndrome compared to all major anomalies) and regions. Random-effects meta-analysis was used to pool results related to survival, need for intensive care and ventilation support. RESULTS: A total of 3554 children were born with Down syndrome out of 89,081 children with major congenital anomalies. The pooled 1-year survival was 95.4%. In every region, > 80% of children with Down syndrome had a hospital admission excluding the birth admission. Hospital length of stay in the first year was higher for children with Down syndrome compared to those with all anomalies (median: 14 versus 7 days). Despite having similar need for ventilation support (9.7% vs. 8.4%), children with Down syndrome had higher rates of intensive care admission than all children with anomalies (24.8% vs. 13.0%). CONCLUSIONS: There is a high need for hospital care for children born with Down syndrome in the first year of life. Future work should continue to explore the long-term prognosis for children with Down syndrome to ensure their care needs are met.