Temporal and geographical variations in survival of children born with congenital anomalies in Europe: A multi-registry cohort study.


Journal

Paediatric and perinatal epidemiology
ISSN: 1365-3016
Titre abrégé: Paediatr Perinat Epidemiol
Pays: England
ID NLM: 8709766

Informations de publication

Date de publication:
11 2022
Historique:
revised: 22 03 2022
received: 10 12 2021
accepted: 03 04 2022
pubmed: 9 6 2022
medline: 21 10 2022
entrez: 8 6 2022
Statut: ppublish

Résumé

Congenital anomalies are a major cause of perinatal, neonatal and infant mortality. The aim was to investigate temporal changes and geographical variation in survival of children with major congenital anomalies (CA) in different European areas. In this population-based linkage cohort study, 17 CA registries members of EUROCAT, the European network for the surveillance of CAs, successfully linked data on 115,219 live births with CAs to mortality records. Registries estimated Kaplan-Meier survival at 28 days and 5 years of age and fitted Cox's proportional hazards models comparing mortality at 1 year and 1-9 years of age for children born during 2005-2014 with those born during 1995-2004. The hazard ratios (HR) from each registry were combined centrally using a random-effects model. The 5-year survival conditional on having survived to 28 days of age was calculated. The overall risk of death by 1 year of age for children born with any major CA in 2005-2014 decreased compared to 1995-2004 (HR 0.68, 95% confidence interval [CI] 0.53, 0.89). Survival at 5 years of age ranged between registries from 97.6% to 87.0%. The lowest survival was observed for the registry of OMNI-Net (Ukraine) (87.0%, 95% CI 86.1, 87.9). Survival of children with CAs improved for births in 2005-2014 compared with 1995-2004. The use of CA registry data linked to mortality data enables investigation of survival of children with CAs. Factors such as defining major CAs, proportion of terminations of pregnancy for foetal anomaly, source of mortality data and linkage methods are important to consider in the design of future studies and in the interpretation of the results on survival of children with CAs.

Sections du résumé

BACKGROUND
Congenital anomalies are a major cause of perinatal, neonatal and infant mortality.
OBJECTIVES
The aim was to investigate temporal changes and geographical variation in survival of children with major congenital anomalies (CA) in different European areas.
METHODS
In this population-based linkage cohort study, 17 CA registries members of EUROCAT, the European network for the surveillance of CAs, successfully linked data on 115,219 live births with CAs to mortality records. Registries estimated Kaplan-Meier survival at 28 days and 5 years of age and fitted Cox's proportional hazards models comparing mortality at 1 year and 1-9 years of age for children born during 2005-2014 with those born during 1995-2004. The hazard ratios (HR) from each registry were combined centrally using a random-effects model. The 5-year survival conditional on having survived to 28 days of age was calculated.
RESULTS
The overall risk of death by 1 year of age for children born with any major CA in 2005-2014 decreased compared to 1995-2004 (HR 0.68, 95% confidence interval [CI] 0.53, 0.89). Survival at 5 years of age ranged between registries from 97.6% to 87.0%. The lowest survival was observed for the registry of OMNI-Net (Ukraine) (87.0%, 95% CI 86.1, 87.9).
CONCLUSIONS
Survival of children with CAs improved for births in 2005-2014 compared with 1995-2004. The use of CA registry data linked to mortality data enables investigation of survival of children with CAs. Factors such as defining major CAs, proportion of terminations of pregnancy for foetal anomaly, source of mortality data and linkage methods are important to consider in the design of future studies and in the interpretation of the results on survival of children with CAs.

Identifiants

pubmed: 35675091
doi: 10.1111/ppe.12884
pmc: PMC9796712
doi:

Types de publication

Journal Article Research Support, Non-U.S. Gov't

Langues

eng

Sous-ensembles de citation

IM

Pagination

792-803

Subventions

Organisme : Medical Research Council
ID : MR/K02325X/1
Pays : United Kingdom

Informations de copyright

© 2022 The Authors. Paediatric and Perinatal Epidemiology published by John Wiley & Sons Ltd.

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Auteurs

Michele Santoro (M)

Unit of Epidemiology of Rare diseases and Congenital anomalies, Institute of Clinical Physiology, National Research Council, Pisa, Italy.

Alessio Coi (A)

Unit of Epidemiology of Rare diseases and Congenital anomalies, Institute of Clinical Physiology, National Research Council, Pisa, Italy.

Anna Pierini (A)

Unit of Epidemiology of Rare diseases and Congenital anomalies, Institute of Clinical Physiology, National Research Council, Pisa, Italy.
Fondazione Toscana Gabriele Monasterio, Pisa, Italy.

Judith Rankin (J)

Population Health Sciences Institute, Faculty of Medical Sciences, Newcastle University, Newcastle upon Tyne, UK.

Svetlana V Glinianaia (SV)

Population Health Sciences Institute, Faculty of Medical Sciences, Newcastle University, Newcastle upon Tyne, UK.

Joachim Tan (J)

Population Health Research Institute, St George's, University of London, London, UK.

Abigail Reid (A)

Population Health Research Institute, St George's, University of London, London, UK.

Ester Garne (E)

Paediatric Department, Hospital Lillebaelt, Kolding, Denmark.

Maria Loane (M)

Faculty of Life and Health Sciences, Ulster University, Coleraine, UK.

Joanne Given (J)

Faculty of Life and Health Sciences, Ulster University, Coleraine, UK.

Amaia Aizpurua (A)

Public Health Division of Gipuzkoa, BioDonostia Research Institute, San Sebastian, Spain.

Gianni Astolfi (G)

IMER Registry, Department of Neuroscience and Rehabilitation, University of Ferrara, Ferrara, Italy.

Ingeborg Barisic (I)

Children's Hospital Zagreb, Centre of Excellence for Reproductive and Regenerative Medicine, Medical School University of Zagreb, Zagreb, Croatia.

Clara Cavero-Carbonell (C)

Rare Diseases Research Unit, Foundation for the Promotion of Health and Biomedical Research in the Valencian Region, Valencia, Spain.

Hermien E K de Walle (HEK)

Department of Genetics, University Medical Center Groningen, University of Groningen, Groningen, the Netherlands.

Elly Den Hond (E)

Provincial Institute for Hygiene, Antwerp, Belgium.

Laura García-Villodre (L)

Rare Diseases Research Unit, Foundation for the Promotion of Health and Biomedical Research in the Valencian Region, Valencia, Spain.

Miriam Gatt (M)

Malta Congenital Anomalies Registry, Directorate for Health Information and Research, Pieta, Malta.

Mika Gissler (M)

THL Finnish Institute for Health and Welfare, Information Services Department, Helsinki, Finland.

Sue Jordan (S)

Faculty of Medicine, Health & Life Science, Swansea University, Swansea, UK.

Babak Khoshnood (B)

Université de Paris, CRESS-Epopé, INSERM, INRA, Paris, France.

Sonja Kiuru-Kuhlefelt (S)

THL Finnish Institute for Health and Welfare, Information Services Department, Helsinki, Finland.

Kari Klungsøyr (K)

Department of Global Public Health and Primary Care, University of Bergen, Bergen, Norway.
Division of Mental and Physical Health, Norwegian Institute of Public Health, Bergen, Norway.

Nathalie Lelong (N)

Université de Paris, CRESS-Epopé, INSERM, INRA, Paris, France.

Renée Lutke (R)

Department of Genetics, University Medical Center Groningen, University of Groningen, Groningen, the Netherlands.

Olatz Mokoroa (O)

Public Health Division of Gipuzkoa, BioDonostia Research Institute, San Sebastian, Spain.

Vera Nelen (V)

Provincial Institute for Hygiene, Antwerp, Belgium.

Amanda J Neville (AJ)

Imer registry Centre for Epidemiology and Clinical Research University of Ferrara and Azienda Ospedaliera Universitaria di Ferrara, Ferrara, Italy.

Ljubica Odak (L)

Children's Hospital Zagreb, Centre of Excellence for Reproductive and Regenerative Medicine, Medical School University of Zagreb, Zagreb, Croatia.

Anke Rissmann (A)

Malformation Monitoring Centre Saxony-Anhalt, Medical Faculty Otto-von-Guericke-University Magdeburg, Magdeburg, Germany.

Ieuan Scanlon (I)

Faculty of Medicine, Health & Life Science, Swansea University, Swansea, UK.

Stine Kjaer Urhoj (SK)

Paediatric Department, Hospital Lillebaelt, Kolding, Denmark.

Diana Wellesley (D)

Faculty of Medicine, University of Southampton and Wessex Clinical Genetics Service, Princess Anne Hospital, Southampton, UK.

Wladimir Wertelecki (W)

OMNI-Net for Children International Charitable Fund, Rivne, Ukraine.

Lyubov Yevtushok (L)

OMNI-Net for Children International Charitable Fund, Rivne, Ukraine.

Joan K Morris (JK)

Population Health Research Institute, St George's, University of London, London, UK.

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