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Lookup NU author(s): Dr Svetlana Glinianaia, Professor Judith Rankin
This work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License (CC BY-NC 4.0).
© 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.
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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