Methods. A European, population-based data-linkage cohort study (EUROlinkCAT). Children up to 5 years of age registered in nine EUROCAT registries (national and regional) in six countries and children without congenital anomalies (reference children) living in the same geographical areas were included. Data on hospitalisations and surgical procedures for all children were obtained by electronic linkage to hospital databases.
Results. The study included 91,504 EUROCAT children and 1,960,272 reference children. Overall, 1,200 (1.3%, 95% CI 1.2-1.6) EUROCAT children and 374 (0.016%, 95% CI 0.009-0.026) reference children had a surgical code for gastrostomy within the first 5 years of life. There were geographical variations across Europe with higher rates in Northern Europe compared to Southern Europe. Around one in four children with Cornelia de Lange syndrome and Wolf-Hirschhorn syndrome had a gastrostomy. Among children with structural anomalies those with esophageal atresia had the highest proportion of gastrostomy (15.9%).
Conclusions. This study including almost 2 million reference children in Europe found that only 0.016% of these children had a surgery code for gastrostomy before age 5 years. The children with congenital anomalies were on average 80 times more likely to need a gastrostomy before age 5 years than children without congenital anomalies. More than two thirds of gastrostomy procedures performed within the first 5 years of life were in children with congenital anomalies.
Bibliographical noteFunding This project has received funding from the European Union’s Horizon
2020 research and innovation programme under grant agreement no. 733001.