Open Access

ARTICLE

Changing prevalence of severe congenital heart disease: Results from the National Register for Congenital Heart Defects in Germany

Constanze Pfitzer^1,2,3, Paul C. Helm⁴, Hannah Ferentzi^1,5, Lisa-Maria Rosenthal¹, Ulrike M. M. Bauer^4,6, Felix Berger^1,3,7, Katharina R. L. Schmitt^1,3

1 Department of Congenital Heart Disease - Pediatric Cardiology, German Heart Center Berlin, Berlin, Germany
2 Berlin Institute of Health (BIH), Berlin, Germany
3 DZHK (German Center for Cardiovascular Research), Partner Site Berlin, Germany
4 National Register for Congenital Heart Defects, DZHK (German Center for Cardiovascular Research), Berlin, Germany
5 Unit for Psychosomatic Medicine, German Heart Center Berlin, Berlin, Germany
6 Competence Network Congenital Heart Defects, Berlin, Germany
7 Department of Pediatric Cardiology, Charite University Hospital Berlin, Berlin, Germany

* Corresponding Author: Constanze Pfitzer, Department of Congenital Heart Disease - Pediatric Cardiology, Deutsches Herzzentrum Berlin, Augustenburger Platz 1, 13353 Berlin, Germany. Email:

Congenital Heart Disease 2017, 12(6), 787-793. https://doi.org/10.1111/chd.12515

Abstract

Objective: To assess the prevalence of congenital heart disease (CHD) in Germany in relation to phenotypes, severity and gender.
Design: Cross-sectional registry study.
Setting: We analyzed data from patients with CHD born between 1996 and 2015.
Patients: A total of 26 630 patients, registered with the NRCHD, were born between 1996 and 2015. 10 927 patients were excluded from the current analysis due to prior registration with the NRCHD under the German PAN Prevalence Study, which showed a potential bias in the inclusion of this patient population (proportion of mild cardiac lesions was comparatively high due to improved diagnostic capability for earlier identifying minor lesions). At least 15 703 patients with demographic data and detailed medical information were included in the current study.
Interventions: None.
Outcome Measures: Prevalence of CHD in Germany differentiated into gender, severity, and phenotype.
Results: In total, 15 703 patients with CHD (47.1% female) were included in this study. The five most common phenotypes were found to be ventricular septal defect (19.2%), atrial septal defect (13.0%), Tetralogy of Fallot (9.3%), univentricular heart (9.4%), and coractation of the aortae (7.0%). The prevalence of CHD in regard to severity changed over the duration of the observation period. From 1996 to 2007, the number of simple CHD rose steadily (P< .001), whereas the number of severe CHD has grown significantly since 2008/2009 (P < .001). In regard to gender, the prevalence of simple CHD was higher in females, whereas complex lesions were more common in males (P < .001).
Conclusions: Our study shows a growing number of registered severe CHD in the recent decade in Germany. This development is noteworthy as it implicates a growing demand for first intensive hospital care, expert pediatric cardiologic aftercare, and consequently higher economic impact for this patient population.

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