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

Fouke Ombelet,Eva Goossens,Ruben Willems,Lieven Annemans,Werner Budts,Julie De Backer,Katya De Groote,Stéphane Moniotte,Liesbet Van Bulck,Ariane Marelli,Philip Moons

doi:10.1016/j.ijcard.2020.05.059

Abstract

BackgroundCongenital 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. MethodsData 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. ResultsBELCODAC 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%). ConclusionsBELCODAC comprises longitudinal data on patients with CHD in Belgium. This will help build evidence-based provision of care to the changing CHD population.

Highlights

Epidemiology of congenital heart disease (CHD) has changed over the past decades [1,2,3]
Research focused on current epidemiological characteristics and the impact of healthcare provision and organization of care on clinical outcomes and costs at population level may help create coordinated healthcare provision for people with Congenital heart disease (CHD) that is costeffective and accessible, while yielding optimal clinical outcomes
Belgium is a European country with a surface area of 30,528 km2 and a population of 11.4 million, yielding a population density of 372 per square kilometer

Summary

Introduction

Epidemiology of congenital heart disease (CHD) has changed over the past decades [1,2,3]. A new population of older patients (60y and beyond) with mild and moderately complex lesions is emerging, with specific healthcare needs [8,9]. These changes affect the healthcare system and challenge the design of responsive care models. 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. We describe the methodological design of the BELgian COngenital Heart Disease Database combining Administrative and Clinical data (BELCODAC), to investigate patients with CHD. The most prevalent diagnosis is Ventricular Septal Defect in 3879 patients (21%), followed by Atrial Septal Defect in 2565 patients (14%)

Methods

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Discussion

Conclusion