Ten-Year Survival of Children With Congenital Anomalies: A European Cohort Study

Svetlana V Glinianaia*, Judith Rankin, Anna Pierini, Alessio Coi, Michele Santoro, Joachim Tan, Abigail Reid, Ester Garne, Maria Loane, Joanne Given, Clara Cavero-Carbonell, Hermien E K de Walle, Miriam Gatt, Mika Gissler, Anna Heino, Babak Khoshnood, Kari Klungsøyr, Nathalie Lelong, Amanda J Neville, Daniel S ThayerDavid Tucker, Stine K Urhøj, Diana Wellesley, Oscar Zurriaga, Joan K Morris

*Bijbehorende auteur voor dit werk

OnderzoeksoutputAcademicpeer review

3 Citaten (Scopus)
12 Downloads (Pure)


OBJECTIVES: To investigate the survival up to age 10 for children born alive with a major congenital anomaly (CA).

METHODS: This population-based linked cohort study (EUROlinkCAT) linked data on live births from 2005 to 2014 from 13 European CA registries with mortality data. Pooled Kaplan-Meier survival estimates up to age 10 were calculated for these children (77 054 children with isolated structural anomalies and 4011 children with Down syndrome).

RESULTS: The highest mortality of children with isolated structural CAs was within infancy, with survival of 97.3% (95% confidence interval [CI]: 96.6%-98.1%) and 96.9% (95% CI: 96.0%-97.7%) at age 1 and 10, respectively. The 10-year survival exceeded 90% for the majority of specific CAs (27 of 32), with considerable variations between CAs of different severity. Survival of children with a specific isolated anomaly was higher than in all children with the same anomaly when those with associated anomalies were included. For children with Down syndrome, the 10-year survival was significantly higher for those without associated cardiac or digestive system anomalies (97.6%; 95% CI: 96.5%-98.7%) compared with children with Down syndrome associated with a cardiac anomaly (92.3%; 95% CI: 89.4%-95.3%), digestive system anomaly (92.8%; 95% CI: 87.7%-98.2%), or both (88.6%; 95% CI: 83.2%-94.3%).

CONCLUSIONS: Ten-year survival of children born with congenital anomalies in Western Europe from 2005 to 2014 was relatively high. Reliable information on long-term survival of children born with specific CAs is of major importance for parents of these children and for the health care professionals involved in their care.

Originele taal-2English
Aantal pagina's13
Nummer van het tijdschrift3
Vroegere onlinedatum11-feb-2022
StatusPublished - 1-mrt-2022

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