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

Abstract: 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 in form 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 Dat... Mehr ...

Verfasser: Ombelet, Fouke
Goossens, Eva
Willems, Ruben
Annemans, Lieven
Budts, Werner
De Backer, Julie
De Groote, Katya
Moniotte, Stephane
Van Bulck, Liesbet
Marelli, Ariane
Moons, Philip
Dokumenttyp: Artikel
Erscheinungsdatum: 2020
Schlagwörter: Human medicine
Sprache: Englisch
Permalink: https://search.fid-benelux.de/Record/base-28877253
Datenquelle: BASE; Originalkatalog
Powered By: BASE
Link(s) : https://hdl.handle.net/10067/1736220151162165141

Abstract: 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 in form 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. (C) 2020 The Authors. Published by Elsevier B.V.