222 Chapter 8 The overall aim of this thesis was to study the added value of the implementation of value-based healthcare (VBHC) in routine clinical care for patients with an inherited bleeding disorder as defined within the Dutch healthcare context. In the Netherlands, while the objective prevails of maximizing patient value through the routine collection of outcomes that matter to patients, healthcare organizations often bypass the immediate need to measure cost. In addition, in the Netherlands, 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. 1-4 To determine the added value of the implementation of VBHC for patients with inherited bleeding disorders in the Netherlands, I addressed several research questions related to 1) measurement of patient-reported outcomes, 2) patient experiences with patient-reported outcome measurement, and 3) variations in care provision. This final chapter provides an overview and discussion of the main findings, followed by the methodological limitations, recommendations for future research and clinical practice, and the conclusion. MAIN FINDINGS 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 Willebrand disease, inherited platelet function disorders and rare bleeding disorders, and how they can be measured in routine care. Chapter 2 gives an overview of which health outcomes might be impacted in this patient population. I showed that patients with von Willebrand disease, inherited platelet function disorders and rare bleeding disorders experience a decreased general health, vitality, physical and social functioning, and an increased level of pain compared to the general population. Moreover, this review demonstrated that women with bleeding disorders who experience heavy menstrual bleeding report a lower health-related quality of life compared to those without heavy menstrual bleeding. Menstruation and especially heavy menstrual bleeding negatively influence the patients’ daily activities, social relationships, sport activities and ability to go to work/school. 5
RkJQdWJsaXNoZXIy MTk4NDMw