Creating the BELgian COngenital heart disease database combining administrative and clinical data (BELCODAC): Rationale, design and methodology.

Belgium / epidemiology Databases, Factual Heart Defects, Congenital / diagnosis Heart Septal Defects, Atrial Heart Septal Defects, Ventricular Humans
Belgium Congenital heart disease Database management systems Health services research

Journal

International journal of cardiology
ISSN: 1874-1754
Titre abrégé: Int J Cardiol
Pays: Netherlands
ID NLM: 8200291

Informations de publication

Date de publication:
01 10 2020
Historique:
received: 13 01 2020
revised: 26 03 2020
accepted: 18 05 2020
pubmed: 31 5 2020
medline: 15 5 2021
entrez: 31 5 2020
Statut: ppublish

Résumé

Congenital heart disease (CHD) entails a broad spectrum of malformations with various degrees of severity and prognosis. Consequently, new and specific healthcare needs are emerging, requiring responsive healthcare provision. Research on this matter is predominantly performed on population-based databases, to inform clinicians, researchers and policy-makers on health outcomes and economic burden of CHD. Most databases contain data either from administrative sources or from clinical systems. We describe the methodological design of the BELgian COngenital Heart Disease Database combining Administrative and Clinical data (BELCODAC), to investigate patients with CHD. Data on clinical characteristics from three university hospitals in Belgium (Leuven, Ghent and Brussels) were merged with mortality and socio-economic data from the official Belgian statistical office (StatBel), and with healthcare use data from the InterMutualistic Agency, an overarching national organization that collects data from the seven sickness funds for all Belgian citizens. Over 60 variables with multiple entries over time are included in the database. BELCODAC contains data on 18,510 patients, of which 8926 patients (48%) have a mild, 7490 (41%) a moderately complex and 2094 (11%) a complex anatomical heart defect. The most prevalent diagnosis is Ventricular Septal Defect in 3879 patients (21%), followed by Atrial Septal Defect in 2565 patients (14%). BELCODAC comprises longitudinal data on patients with CHD in Belgium. This will help build evidence-based provision of care to the changing CHD population.

Sections du résumé

BACKGROUND
Congenital heart disease (CHD) entails a broad spectrum of malformations with various degrees of severity and prognosis. Consequently, new and specific healthcare needs are emerging, requiring responsive healthcare provision. Research on this matter is predominantly performed on population-based databases, to inform clinicians, researchers and policy-makers on health outcomes and economic burden of CHD. Most databases contain data either from administrative sources or from clinical systems. We describe the methodological design of the BELgian COngenital Heart Disease Database combining Administrative and Clinical data (BELCODAC), to investigate patients with CHD.
METHODS
Data on clinical characteristics from three university hospitals in Belgium (Leuven, Ghent and Brussels) were merged with mortality and socio-economic data from the official Belgian statistical office (StatBel), and with healthcare use data from the InterMutualistic Agency, an overarching national organization that collects data from the seven sickness funds for all Belgian citizens. Over 60 variables with multiple entries over time are included in the database.
RESULTS
BELCODAC contains data on 18,510 patients, of which 8926 patients (48%) have a mild, 7490 (41%) a moderately complex and 2094 (11%) a complex anatomical heart defect. The most prevalent diagnosis is Ventricular Septal Defect in 3879 patients (21%), followed by Atrial Septal Defect in 2565 patients (14%).
CONCLUSIONS
BELCODAC comprises longitudinal data on patients with CHD in Belgium. This will help build evidence-based provision of care to the changing CHD population.

Identifiants

DOI: 10.1016/j.ijcard.2020.05.059 PMID: 32473285
pubmed: 32473285
pii: S0167-5273(20)30124-8
doi: 10.1016/j.ijcard.2020.05.059
pii:
doi:

Types de publication

Journal Article

Langues

eng

Sous-ensembles de citation

IM

Pagination

72-78

Informations de copyright

Copyright © 2020 The Authors. Published by Elsevier B.V. All rights reserved.

Auteurs

Fouke Ombelet (F)

KU Leuven Department of Public Health and Primary Care, Academic Center for Nursing and Midwifery, KU Leuven - University of Leuven, Leuven, Belgium.

Eva Goossens (E)

KU Leuven Department of Public Health and Primary Care, Academic Center for Nursing and Midwifery, KU Leuven - University of Leuven, Leuven, Belgium; Research Foundation Flanders (FWO), Brussels, Belgium; Faculty of Medicine and Health Sciences, Centre for Research and Innovation in Care, Division of Nursing and Midwifery, University of Antwerp, Antwerp, Belgium.

Ruben Willems (R)

Department of Public Health and Primary Care, Ghent University, Ghent, Belgium.

Lieven Annemans (L)

Department of Public Health and Primary Care, Ghent University, Ghent, Belgium.

Werner Budts (W)

KU Leuven Department of Cardiovascular Sciences, KU Leuven - University of Leuven, Leuven, Belgium; Division of Congenital and Structural Cardiology, University Hospitals Leuven, Leuven, Belgium.

Julie De Backer (J)

European Reference Network for Rare Multisystemic Vascular Disease (VASCERN), HTAD Rare Disease Working Group, Belgium; Department of Cardiology and Center for Medical Genetics, Ghent University Hospital, Belgium.

Katya De Groote (K)

Department of Pediatric Cardiology, Ghent University Hospital, Ghent, Belgium.

Stéphane Moniotte (S)

Pediatric and Congenital Cardiology Department, St-Luc University Hospital, Brussels, Belgium.

Liesbet Van Bulck (L)

KU Leuven Department of Public Health and Primary Care, Academic Center for Nursing and Midwifery, KU Leuven - University of Leuven, Leuven, Belgium; Research Foundation Flanders (FWO), Brussels, Belgium.

Ariane Marelli (A)

McGill Adult Unit for Congenital Heart Disease Excellence (MAUDE Unit), McGill University Health Center, Montreal, Quebec, Canada.

Philip Moons (P)

KU Leuven Department of Public Health and Primary Care, Academic Center for Nursing and Midwifery, KU Leuven - University of Leuven, Leuven, Belgium; Institute of Health and Care Sciences, University of Gothenburg, Gothenburg, Sweden; Department of Pediatrics and Child Health, University of Cape Town, Cape Town, South Africa. Electronic address: philip.moons@kuleuven.be.

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Classifications MeSH

questionsmedicales.fr › Régions géographiques › Europe › Belgique › Creating the BELgian COngenital heart disease...
questionsmedicales.fr › Sciences de l'information › Mémorisation et recherche des informations › Bases de données comme sujet › Bases de données factuelles › Creating the BELgian COngenital heart disease...
questionsmedicales.fr › Malformations et maladies congénitales, héréditaires et néonatales › Malformations › Malformations cardiovasculaires › Cardiopathies congénitales › Creating the BELgian COngenital heart disease...
questionsmedicales.fr › Malformations et maladies congénitales, héréditaires et néonatales › Malformations › Malformations cardiovasculaires › Cardiopathies congénitales › Malformations des cloisons cardiaques › Communications interauriculaires › Creating the BELgian COngenital heart disease...
questionsmedicales.fr › Malformations et maladies congénitales, héréditaires et néonatales › Malformations › Malformations cardiovasculaires › Cardiopathies congénitales › Malformations des cloisons cardiaques › Communications interventriculaires › Creating the BELgian COngenital heart disease...
questionsmedicales.fr › Eucaryotes › Animaux › Chordés › Vertébrés › Mammifères › Eutheria › Primates › Haplorhini › Catarrhini › Hominidae › Humains › Creating the BELgian COngenital heart disease...