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 Thayer; David Tucker; Stine K Urhøj; Diana Wellesley; Oscar Zurriaga; Joan K Morris

doi:10.1542/peds.2021-053793

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

^*Corresponding author for this work

Reproductive Origins of Adult Health and Disease (ROAHD)

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Abstract

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.

Original language	English
Article number	e2021053793.
Number of pages	13
Journal	Pediatrics
Volume	149
Issue number	3
Early online date	11-Feb-2022
DOIs	https://doi.org/10.1542/peds.2021-053793
Publication status	Published - 1-Mar-2022

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Glinianaia, S. V., Rankin, J., Pierini, A., Coi, A., Santoro, M., Tan, J., Reid, A., Garne, E., Loane, M., Given, J., Cavero-Carbonell, C., de Walle, H. E. K., Gatt, M., Gissler, M., Heino, A., Khoshnood, B., Klungsøyr, K., Lelong, N., Neville, A. J., ... Morris, J. K. (2022). Ten-Year Survival of Children With Congenital Anomalies: A European Cohort Study. Pediatrics, 149(3), Article e2021053793. https://doi.org/10.1542/peds.2021-053793

@article{2a0833a27fd14b4c83d336f270d80787,

title = "Ten-Year Survival of Children With Congenital Anomalies: A European Cohort Study",

abstract = "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.",

author = "Glinianaia, {Svetlana V} and Judith Rankin and Anna Pierini and Alessio Coi and Michele Santoro and Joachim Tan and Abigail Reid and Ester Garne and Maria Loane and Joanne Given and Clara Cavero-Carbonell and {de Walle}, {Hermien E K} and Miriam Gatt and Mika Gissler and Anna Heino and Babak Khoshnood and Kari Klungs{\o}yr and Nathalie Lelong and Neville, {Amanda J} and Thayer, {Daniel S} and David Tucker and Urh{\o}j, {Stine K} and Diana Wellesley and Oscar Zurriaga and Morris, {Joan K}",

year = "2022",

month = mar,

day = "1",

doi = "10.1542/peds.2021-053793",

language = "English",

volume = "149",

journal = "Pediatrics",

issn = "0031-4005",

publisher = "AMER ACAD PEDIATRICS",

number = "3",

}

Glinianaia, SV, Rankin, J, Pierini, A, Coi, A, Santoro, M, Tan, J, Reid, A, Garne, E, Loane, M, Given, J, Cavero-Carbonell, C, de Walle, HEK, Gatt, M, Gissler, M, Heino, A, Khoshnood, B, Klungsøyr, K, Lelong, N, Neville, AJ, Thayer, DS, Tucker, D, Urhøj, SK, Wellesley, D, Zurriaga, O & Morris, JK 2022, 'Ten-Year Survival of Children With Congenital Anomalies: A European Cohort Study', Pediatrics, vol. 149, no. 3, e2021053793. https://doi.org/10.1542/peds.2021-053793

TY - JOUR

T1 - Ten-Year Survival of Children With Congenital Anomalies

T2 - A European Cohort Study

AU - Glinianaia, Svetlana V

AU - Rankin, Judith

AU - Pierini, Anna

AU - Coi, Alessio

AU - Santoro, Michele

AU - Tan, Joachim

AU - Reid, Abigail

AU - Garne, Ester

AU - Loane, Maria

AU - Given, Joanne

AU - Cavero-Carbonell, Clara

AU - de Walle, Hermien E K

AU - Gatt, Miriam

AU - Gissler, Mika

AU - Heino, Anna

AU - Khoshnood, Babak

AU - Klungsøyr, Kari

AU - Lelong, Nathalie

AU - Neville, Amanda J

AU - Thayer, Daniel S

AU - Tucker, David

AU - Urhøj, Stine K

AU - Wellesley, Diana

AU - Zurriaga, Oscar

AU - Morris, Joan K

PY - 2022/3/1

Y1 - 2022/3/1

N2 - 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.

AB - 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.

U2 - 10.1542/peds.2021-053793

DO - 10.1542/peds.2021-053793

M3 - Article

C2 - 35146505

SN - 0031-4005

VL - 149

JO - Pediatrics

JF - Pediatrics

IS - 3

M1 - e2021053793.

ER -

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

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