Hospital Length of Stay and Surgery among European Children with Rare Structural Congenital Anomalies—A Population-Based Data Linkage Study

Ester Garne (), Joachim Tan, Mads Damkjaer, Elisa Ballardini, Clara Cavero-Carbonell, Alessio Coi, Laura Garcia-Villodre, Mika Gissler, Joanne Given, Anna Heino, Sue Jordan, Elizabeth Limb, Maria Loane, Amanda J. Neville, Anna Pierini, Anke Rissmann, David Tucker, Stine Kjaer Urhoj and Joan Morris
Additional contact information
Ester Garne: Department of Paediatrics and Adolescent Medicine, Lillebaelt Hospital, University Hospital of Southern Denmark, 6000 Kolding, Denmark
Joachim Tan: Population Health Research Institute, St George’s University of London, London SW17 0RE, UK
Mads Damkjaer: Department of Paediatrics and Adolescent Medicine, Lillebaelt Hospital, University Hospital of Southern Denmark, 6000 Kolding, Denmark
Elisa Ballardini: IMER Registry, Centre for Clinical and Epidemiological Research, University of Ferrara and Azienda Ospedaliero Universitario di Ferrara, 44121 Ferrara, Italy
Clara Cavero-Carbonell: Rare Diseases Research Unit, Foundation for the Promotion of Health and Biomedical Research in the Valencian Region, 46020 Valencia, Spain
Alessio Coi: Unit of Epidemiology of Rare Diseases and Congenital Anomalies, Institute of Clinical Physiology, National Research Council, 56124 Pisa, Italy
Laura Garcia-Villodre: Rare Diseases Research Unit, Foundation for the Promotion of Health and Biomedical Research in the Valencian Region, 46020 Valencia, Spain
Mika Gissler: THL Finnish Institute for Health and Welfare, Department of Knowledge Brokers, 00271 Helsinki, Finland
Joanne Given: Faculty of Life and Health Sciences, Ulster University, Belfast BT15 1AP, UK
Anna Heino: THL Finnish Institute for Health and Welfare, Department of Knowledge Brokers, 00271 Helsinki, Finland
Sue Jordan: Faculty of Medicine, Health & Life Sciences, Swansea University, Swansea SA2 8PP, UK
Elizabeth Limb: Population Health Research Institute, St George’s University of London, London SW17 0RE, UK
Maria Loane: Faculty of Life and Health Sciences, Ulster University, Belfast BT15 1AP, UK
Amanda J. Neville: IMER Registry, Centre for Clinical and Epidemiological Research, University of Ferrara and Azienda Ospedaliero Universitario di Ferrara, 44121 Ferrara, Italy
Anna Pierini: Unit of Epidemiology of Rare Diseases and Congenital Anomalies, Institute of Clinical Physiology, National Research Council, 56124 Pisa, Italy
Anke Rissmann: Malformation Monitoring Centre Saxony-Anhalt, Medical Faculty, Otto-von-Guericke-University Magdeburg, 39106 Magdeburg, Germany
David Tucker: Congenital Anomaly Register & Information Service for Wales (CARIS) Public Health Knowledge and Research, Public Health Wales, Swansea SA6 8DP, UK
Stine Kjaer Urhoj: Department of Paediatrics and Adolescent Medicine, Lillebaelt Hospital, University Hospital of Southern Denmark, 6000 Kolding, Denmark
Joan Morris: Population Health Research Institute, St George’s University of London, London SW17 0RE, UK

IJERPH, 2023, vol. 20, issue 5, 1-11

Abstract: Little is known about morbidity for children with rare structural congenital anomalies. This European, population-based data-linkage cohort study analysed data on hospitalisations and surgical procedures for 5948 children born 1995–2014 with 18 rare structural congenital anomalies from nine EUROCAT registries in five countries. In the first year of life, the median length of stay (LOS) ranged from 3.5 days (anotia) to 53.8 days (atresia of bile ducts). Generally, children with gastrointestinal anomalies, bladder anomalies and Prune-Belly had the longest LOS. At ages 1–4, the median LOS per year was ≤3 days for most anomalies. The proportion of children having surgery before age 5 years ranged from 40% to 100%. The median number of surgical procedures for those under 5 years was two or more for 14 of the 18 anomalies and the highest for children with Prune-Belly at 7.4 (95% CI 2.5–12.3). The median age at first surgery for children with atresia of bile ducts was 8.4 weeks (95% CI 7.6–9.2) which is older than international recommendations. Results from the subset of registries with data up to 10 years of age showed that the need for hospitalisations and surgery continued. The burden of disease in early childhood is high for children with rare structural congenital anomalies.

Keywords: rare congenital anomalies; morbidity; length of stay; surgery (search for similar items in EconPapers)
JEL-codes: I I1 I3 Q Q5 (search for similar items in EconPapers)
Date: 2023
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