Duurzaamheid van de zorg voor aangeboren hartafwijkingen Een cross-nationale levensloopanalyse van gezondheidszorgkosten en zorggebruik in Zweden en België

Congenital heart disease (CHD) occurs in about 9 per 1,000 newborns. It comprises a wide spectrum of simple, moderate, and complex severity lesions. To date, about 95% of children born with CHD can reach adulthood. Irrespective of the treatment received in childhood, most of these patients require life-long follow-up. Since CHD comprises a spectrum of heart lesions, patients may be cared for at three levels of care: (i) care exclusively in a CHD specialist center; (ii) care shared between CHD specialists and local general cardiologists; and (iii) non-CHD specialist care, either by general cardiologists or general practitioners. To date, the anatomical complexity of the patients' heart defects is predominantly used to determine the appropriate setting of care. Unfortunately, there is currently very limited empirical data available to support this assignment of patients to the different levels of care. This results sometimes in a high proportion of patients that is kept into the tertiary care system, which may outstrip the capacity of these centers on the long run. On the other hand, a substantial proportion of patients experience care gaps. These two phenomena may yield suboptimal care provision for the growing population of adults with CHD. The overall aim of this PhD project is to develop and test a strategy for risk stratification to determine the most appropriate setting of care for patients with CHD, based on clinical outcomes and healthcare expenditures. The ultimate goal is to develop an empirically-based algorithm that guides clinicians, administrators and policymakers to allocate patients to the most optimal level of care in terms of the best clinical outcomes at the lowest cost. The project will use an open, multicenter retrospective cohort design, combining data from clinical databases and national registries in Sweden and Belgium. Data on mortality, cardiovascular-related morbidities, healthcare utilization will be linked to the levels of care.