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Long-Term Healthcare Utilization, Medical Cost, and Societal Cost in Adult Congenital Heart Disease

Ruben Willems1,*, Fouke Ombelet2, Eva Goossens2,3,4, Katya De Groote5, Werner Budts6,7, Stéphane Moniotte8, Michèle de Hosson9, Liesbet Van Bulck2,4, Arianne Marelli10, Philip Moons2,11,12, Julie De Backer4,9,#, Lieven Annemans1,#

1 Department of Public Health and Primary Care, Ghent University, Ghent, Belgium
2 KU Leuven Department of Public Health and Primary Care, Academic Center for Nursing and Midwifery, KU Leuven–University of Leuven, Leuven, Belgium
3 Faculty of Medicine and Health Sciences, Centre for Research and Innovation in Care, Division of Nursing and Midwifery, University of Antwerp, Antwerp, Belgium
4 Research Foundation Flanders (FWO), Brussels, Belgium
5 Department of Pediatric Cardiology, University Hospital Ghent, Ghent, Belgium
6 KU Leuven Department of Cardiovascular Sciences, KU Leuven–University of Leuven, Leuven, Belgium
7 Division of Congenital and Structural Cardiology, University Hospitals Leuven, Leuven, Belgium
8 Pediatric and Congenital Cardiology Division, St-Luc University Hospital, Brussels, Belgium
9 Department of Adult Congenital Cardiology, Ghent University Hospital, Ghent, Belgium
10 McGill Adult Unit for Congenital Heart Disease Excellence (MAUDE Unit), McGill University Health Center, Montreal, Quebec, Canada
11 Institute of Health and Care Sciences, University of Gothenburg, Gothenburg, Sweden
12 Department of Pediatrics and Child Health, University of Cape Town, Cape Town, South Africa

* Corresponding Author: Ruben Willems. Email: email
# Shared last author

Congenital Heart Disease 2020, 15(6), 399-429.


Objective: Cost-of-illness studies in Adult Congenital Heart Disease (ACHD) have mainly been limited to hospitalizations. This is the first paper to provide a comprehensive overview from a societal perspective including inpatient and outpatient medical costs, and absenteeism- and unemployment-related societal costs. Methods: A retrospective longitudinal (2006–2015) database analysis was performed in Belgium combining administrative and clinical databases (n = 10,572). Trends in resource use and costs per patient year were standardized to assess the impact of changes in the patient population composition. Generalized Linear Mixed Models assessed the impact of age, sex, lesion complexity, and time. Costs were converted to 2018 values. Results: Medical costs per patient year increased from €3490 to €4536 with a milder increase in patients with severe lesions. Although unemployment-related costs decreased, total societal costs increased due to more long-term (≥1 yr) invalidity. An increase in long-term invalidity was particularly found in patients ≥30 yrs and in patients with mild or moderate lesions. Resource use (e.g., dental care, nursing care, physiotherapy, emergency department) increased substantially in all patient groups over time. The annual percentage of patients with severe lesions receiving any cardiac and specialized cardiac follow-up increased with respectively 11 and 13 percent points to 81% and 52%, with a simultaneous decrease in hospitalization rate. Conclusion: Medical cost increases in ACHD are most pronounced in patients with mild and moderate lesions, relatable to their higher age. Economic data are necessary to allocate resources efficiently to ensure sustainable, qualitative care in an ageing patient population with strong increases in medical and long-term invalidityrelated costs.


Cite This Article

APA Style
Willems, R., Ombelet, F., Goossens, E., Groote, K.D., Budts, W. et al. (2020). Long-term healthcare utilization, medical cost, and societal cost in adult congenital heart disease. Congenital Heart Disease, 15(6), 399-429.
Vancouver Style
Willems R, Ombelet F, Goossens E, Groote KD, Budts W, Moniotte S, et al. Long-term healthcare utilization, medical cost, and societal cost in adult congenital heart disease. Congeni Heart Dis. 2020;15(6):399-429
IEEE Style
R. Willems et al., "Long-Term Healthcare Utilization, Medical Cost, and Societal Cost in Adult Congenital Heart Disease," Congeni. Heart Dis., vol. 15, no. 6, pp. 399-429. 2020.


cc This work is licensed under a Creative Commons Attribution 4.0 International License , which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
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