PhD defence E.S. (Shannon) van Hoorn

Brief summary:

This thesis aimed to study the added value of the implementation of value-based healthcare (VBHC), as defined within the Dutch healthcare context, in routine clinical care for patients with an inherited bleeding disorder. This thesis provides a recommendation on which patient-reported outcomes should be measured in the care for patients with an inherited bleeding disorder, and which patient-reported outcomes should be used to collect these outcomes. In addition, this thesis provides insight into the current care provision for young children with hemophilia which can be used to guide the collection and use of outcome information.

The results of this thesis are inconclusive about the added value of the implementation of VBHC for patients with inherited bleeding disorders. The collection of outcome information could improve shared decision making as long as the information is discussed during the consultation. However, the lack of practice variation in the care for patients with inherited bleeding disorders and overall difficulties in determining if difference in patient outcomes reflects true differences in quality of care, decrease the potential value of collecting outcome information to stimulate continuous learning and quality improvement. Additional research should therefore be performed to further investigate the added value of the implementation of VBHC for patients with an inherited bleeding disorder.