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Creating the BELgian COngenital heart disease database combining administrative and clinical data (BELCODAC):
Fouke Ombelet1, Eva Goossens2, Ruben Willems3
1KU Leuven Department of Public Health and Primary Care, Academic Center for Nursing and Midwifery, KU Leuven - University of Leuven, Leuven, Belgium.
Insights
The BELgian Congenital Heart Disease Database (BELCODAC) combines clinical and administrative data for over 18,500 patients. This comprehensive dataset will inform evidence-based care for the evolving congenital heart disease population in Belgium.
Area of Science:
- Cardiology
- Public Health
- Health Informatics
Background:
- Congenital heart disease (CHD) presents a wide range of severities and prognoses, necessitating tailored healthcare.
- Existing research often relies on population-based databases, utilizing administrative or clinical data.
- There is a growing need for integrated datasets to understand the health outcomes and economic impact of CHD.
Purpose of the Study:
- To describe the methodological design of the BELgian Congenital Heart Disease Database combining Administrative and Clinical data (BELCODAC).
- To create a comprehensive resource for investigating patients with congenital heart disease in Belgium.
- To inform clinicians, researchers, and policymakers on health outcomes and the economic burden of CHD.
Main Methods:
- Merged clinical data from three Belgian university hospitals with national mortality, socio-economic, and healthcare utilization data.
- Incorporated over 60 variables with longitudinal entries for each patient.
- Combined administrative and clinical data sources to form the BELCODAC database.
Main Results:
- The BELCODAC database includes data on 18,510 patients with congenital heart disease.
- Patient data is categorized by anatomical heart defect complexity: mild (48%), moderate (41%), and complex (11%).
- The most common diagnoses are Ventricular Septal Defect (21%) and Atrial Septal Defect (14%).
Conclusions:
- BELCODAC provides longitudinal data on Belgian patients with CHD.
- This database will support the development of evidence-based care strategies for the changing CHD patient population.
- Facilitates a deeper understanding of CHD prevalence, complexity, and healthcare needs in Belgium.
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.
