Fouke Ombelet1, Eva Goossens2, Ruben Willems3, Lieven Annemans3, Werner Budts4, Julie De Backer5, Katya De Groote6, Stéphane Moniotte7, Liesbet Van Bulck8, Ariane Marelli9, Philip Moons10. 1. KU Leuven Department of Public Health and Primary Care, Academic Center for Nursing and Midwifery, KU Leuven - University of Leuven, Leuven, Belgium. 2. 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. 3. Department of Public Health and Primary Care, Ghent University, Ghent, Belgium. 4. KU Leuven Department of Cardiovascular Sciences, KU Leuven - University of Leuven, Leuven, Belgium; Division of Congenital and Structural Cardiology, University Hospitals Leuven, Leuven, Belgium. 5. 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. 6. Department of Pediatric Cardiology, Ghent University Hospital, Ghent, Belgium. 7. Pediatric and Congenital Cardiology Department, St-Luc University Hospital, Brussels, Belgium. 8. 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. 9. McGill Adult Unit for Congenital Heart Disease Excellence (MAUDE Unit), McGill University Health Center, Montreal, Quebec, Canada. 10. 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.
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 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.
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.
Authors: Julie De Backer; Lieven Annemans; Ruben Willems; Fouke Ombelet; Eva Goossens; Katya De Groote; Werner Budts; Stéphane Moniotte; Michèle de Hosson; Liesbet Van Bulck; Ariane Marelli; Philip Moons Journal: Eur J Health Econ Date: 2021-04-09
Authors: Jef Van den Eynde; Cedric Manlhiot; Alexander Van De Bruaene; Gerhard-Paul Diller; Alejandro F Frangi; Werner Budts; Shelby Kutty Journal: Front Cardiovasc Med Date: 2021-12-02