240 Addendum SUMMARY Zie pagina 246-251 voor de Nederlandse samenvatting. Value-based healthcare (VBHC) was first introduced in 2006 as a strategy to combat rising healthcare cost and unwanted variation in quality of care and outcomes. According to VBHC framework, healthcare organizations should aim to maximize patient value, where value is defined as the health outcomes that matter to patients relative to the cost of achieving those outcomes. From 2011 onwards, hospitals in the Netherlands have been implementing VBHC principles to improve the care for patients with various medical conditions. The Dutch interpretation of VBHC, however, deviates slightly from the original concept. While the objective of maximizing patient value through the routine collection of outcomes that matter to patients prevails, healthcare organizations in the Netherlands often bypass the immediate need to measure cost. In addition, emphasis is placed on the use of outcome information to improve shared decision making and to create a culture of continuous learning and quality improvement. This thesis aimed to assess the added value of the implementation of VBHC, as defined within the Dutch healthcare context, in routine clinical care for patients with an inherited bleeding disorder. The first part of this thesis identified which health outcomes are important to measure by patients with von Willebrand disease, inherited platelet function disorders and rare bleeding disorders and how to measure them. The second part focused on how patients experience the collection of outcome information in routine clinical care, and the third part identified possible variations in the care provision for patients with hemophilia in the Netherlands that could be used as a starting point for continuous learning and quality improvement. In Chapter 1, the general introduction, VBHC, inherited bleeding disorders, and the context of this research are described in more detail. PART I: MEASURING PATIENT-REPORTED OUTCOMES Relevant patient-reported outcomes To facilitate the collection of outcome information in routine care for patients with inherited bleeding disorders, the first part of this thesis provides information on which health outcomes are relevant for patients with von
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