Causes of death in children with congenital anomalies up to age 10 in eight European countries
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 Januar...
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| Format: | Article |
| Language: | English |
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BMJ Publishing Group
2023-12-01
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| Series: | BMJ Paediatrics Open |
| Online Access: | https://bmjpaedsopen.bmj.com/content/7/1/e001617.full |
| _version_ | 1797368277592178688 |
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| author | Mika Gissler Maria Loane Ingeborg Barisic Hermien E K de Walle Miriam Gatt Kari Klungsoyr Anna Pierini Anke Rissmann Oscar Zurriaga Diana G Wellesley Clara Cavero-Carbonell Olatz Mokoroa Judith Rankin Ester Garne Sue Jordan Anna Heino Michele Santoro Alessio Coi Joan Morris Svetlana V Glinianaia Elisa Ballardini Joachim Tan Abigail Reid Stine Kjaer Urhoj Lyubov Yevtushok Diana Akhmedzhanova Joanne Given Amanda Julie Neville Amaia Aizpurua Renee Lutke Daniel S Thayer |
| author_facet | Mika Gissler Maria Loane Ingeborg Barisic Hermien E K de Walle Miriam Gatt Kari Klungsoyr Anna Pierini Anke Rissmann Oscar Zurriaga Diana G Wellesley Clara Cavero-Carbonell Olatz Mokoroa Judith Rankin Ester Garne Sue Jordan Anna Heino Michele Santoro Alessio Coi Joan Morris Svetlana V Glinianaia Elisa Ballardini Joachim Tan Abigail Reid Stine Kjaer Urhoj Lyubov Yevtushok Diana Akhmedzhanova Joanne Given Amanda Julie Neville Amaia Aizpurua Renee Lutke Daniel S Thayer |
| author_sort | Mika Gissler |
| collection | DOAJ |
| description | 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. |
| first_indexed | 2024-03-08T17:29:16Z |
| format | Article |
| id | doaj.art-f42c5f88e93644388fcf44d53460a7f0 |
| institution | Directory Open Access Journal |
| issn | 2399-9772 |
| language | English |
| last_indexed | 2024-03-08T17:29:16Z |
| publishDate | 2023-12-01 |
| publisher | BMJ Publishing Group |
| record_format | Article |
| series | BMJ Paediatrics Open |
| spelling | doaj.art-f42c5f88e93644388fcf44d53460a7f02024-01-02T16:40:08ZengBMJ Publishing GroupBMJ Paediatrics Open2399-97722023-12-017110.1136/bmjpo-2022-001617Causes of death in children with congenital anomalies up to age 10 in eight European countriesMika Gissler0Maria Loane1Ingeborg Barisic2Hermien E K de Walle3Miriam Gatt4Kari Klungsoyr5Anna Pierini6Anke Rissmann7Oscar Zurriaga8Diana G Wellesley9Clara Cavero-Carbonell10Olatz Mokoroa11Judith Rankin12Ester Garne13Sue Jordan14Anna Heino15Michele Santoro16Alessio Coi17Joan Morris18Svetlana V Glinianaia19Elisa Ballardini20Joachim Tan21Abigail Reid22Stine Kjaer Urhoj23Lyubov Yevtushok24Diana Akhmedzhanova25Joanne Given26Amanda Julie Neville27Amaia Aizpurua28Renee Lutke29Daniel S Thayer30Department of Knowledge Brokers, THL Finnish Institute for Health and Welfare, Helsinki, FinlandInstitute of Nursing and Health Research, Faculty of Life and Health Sciences,Ulster University, Belfast, UKChildren`s Hospital Zagreb, Centre of Excellence for Reproductive and Regenerative Medicine, Medical School University of Zagreb, Zagreb, CroatiaDepartment of Genetics, Groningen University, Groningen, The NetherlandsMalta Congenital Anomalies Registry, Directorate for Health Information and Research, Pieta, MaltaMedical Birth Registry, Nasjonalt folkehelseinstitutt, Bergen, NorwayInstitute of Clinical Physiology National Research Council, Pisa, ItalyMalformation Monitoring Centre Saxony-Anhalt, Medical Faculty, Otto-von-Guericke University, Magdeburg, GermanyRare Diseases Research Join Unit, Foundation for the Promotion of Health and Biomedical Research and Universitat de Valencia, Valencia, SpainUniversity of Southampton and Wessex Clinical Genetics Service, Princess Anne Hospital, Southampton, UKRare Diseases Research Unit, Foundation for the Promotion of Health and Biomedical Research in the Valencian region, Valencia, SpainHealth Division of Gipuzkoa, Biodonostia Health Research Institute, Donostia-San Sebastian, SpainPopulation Health Sciences Institute, Newcastle University, Newcastle upon Tyne, UKDepartment of Paediatrics and Adolescent Medicine, Lillebaelt Hospital, University Hospital of Southern Denmark, Kolding, DenmarkFaculty of Medicine, Health and Life Science, Swansea University, Swansea, UKDepartment of Knowledge Brokers, THL Finnish Institute for Health and Welfare, Helsinki, FinlandUnit of Epidemiology of Rare Diseases and Congenital Anomalies, Institute of Clinical Physiology National Research Council, Pisa, ItalyInstitute of Clinical Physiology, National Research Council Pisa Research Area, Pisa, Italy9Ascendis Pharma, Inc., Newbury Park, CA, USAPopulation Health Sciences Institute, Newcastle University, Newcastle upon Tyne, UKDepartment of Neuroscience and Rehabilitation, University of Ferrara, Ferrara, ItalyPopulation Health Research Institute, St George`s University of London, London, UKPopulation Health Research Institute, St George`s University of London, London, UKSection of Epidemiology, Department of Public Health, University of Copenhagen, Copenhagen, DenmarkOMNI-Net for Children International Charitable Fund, Rivne Regional Medical Diagnostic Center, Rivne, UkraineOMNI-Net for Children International Charitable Fund, Rivne Regional Medical Diagnostic Center, Rivne, UkraineCentre for Maternal, Fetal and Infant Research, Institute of Nursing and Health Research, Ulster University, Belfast, UKIMER Registry, Centre for Clinical and Epidemiological Research, University of Ferrara and Azienda Ospedaliero Universitario di Ferrara, Ferrara, ItalyHealth Division of Gipuzkoa, Biodonostia Health Research Institute, Donostia-San Sebastian, SpainDepartment of Genetics, Groningen University, Groningen, The NetherlandsFaculty of Medicine, Health and Life Science, Swansea University, Swansea, UKBackground 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.https://bmjpaedsopen.bmj.com/content/7/1/e001617.full |
| spellingShingle | Mika Gissler Maria Loane Ingeborg Barisic Hermien E K de Walle Miriam Gatt Kari Klungsoyr Anna Pierini Anke Rissmann Oscar Zurriaga Diana G Wellesley Clara Cavero-Carbonell Olatz Mokoroa Judith Rankin Ester Garne Sue Jordan Anna Heino Michele Santoro Alessio Coi Joan Morris Svetlana V Glinianaia Elisa Ballardini Joachim Tan Abigail Reid Stine Kjaer Urhoj Lyubov Yevtushok Diana Akhmedzhanova Joanne Given Amanda Julie Neville Amaia Aizpurua Renee Lutke Daniel S Thayer Causes of death in children with congenital anomalies up to age 10 in eight European countries BMJ Paediatrics Open |
| title | Causes of death in children with congenital anomalies up to age 10 in eight European countries |
| title_full | Causes of death in children with congenital anomalies up to age 10 in eight European countries |
| title_fullStr | Causes of death in children with congenital anomalies up to age 10 in eight European countries |
| title_full_unstemmed | Causes of death in children with congenital anomalies up to age 10 in eight European countries |
| title_short | Causes of death in children with congenital anomalies up to age 10 in eight European countries |
| title_sort | causes of death in children with congenital anomalies up to age 10 in eight european countries |
| url | https://bmjpaedsopen.bmj.com/content/7/1/e001617.full |
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