Sustainability of Congenital Heart Disease Care: A Cross-National Life-Course Analysis of Healthcare Costs and Utilization in Sweden and Belgium

Abstract

Advances in diagnosis, surgery, and long-term follow-up have transformed congenital heart disease (CHD) from a condition associated with high childhood mortality into a lifelong disease. While survival has improved substantially, the implications on healthcare utilization, costs, and long-term sustainability remain poorly understood. Existing evidence on the economic burden of CHD is fragmented, methodologically heterogeneous, and largely focused on early life and hospital-based cardiac care, limiting its relevance for health system planning.

The aim of this thesis is to examine the sustainability of CHD care across the life course within universal healthcare systems by quantifying patterns of healthcare utilization and costs over time and identifying key cost-driving factors. In doing so, the thesis critically examines assumptions that healthcare utilization and costs are continuously increasing and primarily driven by specialized cardiac care.

Four studies using complementary methods and data sources comprise this thesis. Study I, systematic review synthesizing lesion-specific healthcare cost evidence for pediatric and non-pediatric cases, identifies gaps in the literature. Studies II and III, Swedish registry-based cohort studies, examine inpatient healthcare utilization across the life-course and explore non-linear patterns in temporal trends analysis. Study IV, a registry-linked Belgian cost-of-illness study, quantifies reimbursed healthcare costs in adults with CHD (ACHD), distinguishing between CHD-related, cardiac, and non-cardiac care.

The findings show that CHD cost evidence is predominantly reported from a healthcare payer perspective, fragmented, and methodologically heterogeneous, with a strong concentration in early life and inpatient. Healthcare utilization is highest in infancy and generally declines over time, converging toward patterns observed in the general population – particularly among individuals with non-complex CHD. Long-term utilization trends are non-linear, indicating that linear models may misrepresent true patterns of care. Lastly, the majority of ACHD healthcare costs are attributable to noncardiac care, reflecting the growing importance of comorbidity-related management.

Taken together, these findings challenge prevailing assumptions that CHD care is driven primarily by increasing reliance on specialized cardiac services. Instead, these studies together point out that economic burden within this cohort emerge as a life-course and system-level issue shaped by early-life intensity, evolving utilization patterns, and comorbidity-driven care in adulthood. Thus, this thesis provides a robust empirical foundation for future work on subsidiarity, care organization, and sustainable models of lifelong care for people with CHD.