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Causes of death in children with congenital anomalies up to age 10 in eight European countries

Lookup NU author(s): Dr Svetlana Glinianaia, Professor Judith RankinORCiD

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This work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License (CC BY-NC 4.0).


Abstract

© Author(s) (or their employer(s)) 2023. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ. Background Congenital anomalies (CAs) increase the risk of death during infancy and childhood. This study aimed to evaluate the accuracy of using death certificates to estimate the burden of CAs on mortality for children under 10 years old. Methods Children born alive with a major CA between 1 January 1995 and 31 December 2014, from 13 population-based European CA registries were linked to mortality records up to their 10th birthday or 31 December 2015, whichever was earlier. Results In total 4199 neonatal, 2100 postneonatal and 1087 deaths in children aged 1-9 years were reported. The underlying cause of death was a CA in 71% (95% CI 64% to 78%) of neonatal and 68% (95% CI 61% to 74%) of postneonatal infant deaths. For neonatal deaths the proportions varied by registry from 45% to 89% and by anomaly from 53% for Down syndrome to 94% for tetralogy of Fallot. In children aged 1-9, 49% (95% CI 42% to 57%) were attributed to a CA. Comparing mortality in children with anomalies to population mortality predicts that over 90% of all deaths at all ages are attributable to the anomalies. The specific CA was often not reported on the death certificate, even for lethal anomalies such as trisomy 13 (only 80% included the code for trisomy 13). Conclusions Data on the underlying cause of death from death certificates alone are not sufficient to evaluate the burden of CAs on infant and childhood mortality across countries and over time. Linked data from CA registries and death certificates are necessary for obtaining accurate estimates.


Publication metadata

Author(s): Rissmann A, Tan J, Glinianaia SV, Rankin J, Pierini A, Santoro M, Coi A, Garne E, Loane M, Given J, Reid A, Aizpurua A, Akhmedzhanova D, Ballardini E, Barisic I, Cavero-Carbonell C, De Walle HEK, Gatt M, Gissler M, Heino A, Jordan S, Urhoj SK, Klungsoyr K, Lutke R, Mokoroa O, Neville AJ, Thayer DS, Wellesley DG, Yevtushok L, Zurriaga O, Morris J

Publication type: Article

Publication status: Published

Journal: BMJ Paediatrics Open

Year: 2023

Volume: 7

Issue: 1

Online publication date: 23/06/2023

Acceptance date: 20/08/2022

Date deposited: 27/07/2023

ISSN (electronic): 0040-6376

Publisher: BMJ Publishing Group

URL: http://doi.org/10.1136/bmjpo-2022-001617

DOI: 10.1136/bmjpo-2022-001617

PubMed id: 37353235


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Funding

Funder referenceFunder name
733001Commission of the European Communities

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