11 1 General introduction Continuous learning and improvement through the organization of care Subsequently, before healthcare organizations are able to use routinely collected outcome information, it is essential to gain insight into the current care provision 4,9. Insight into the entire care trajectory, or care pathway, that patients with a specific medical condition follow is essential to determine if there are any warranted or unwanted practice variations across healthcare professionals or healthcare organizations that may influence patient outcomes 29,30. In addition, before improvement initiatives can be derived from the routinely collected outcome information, it is important to determine if variation in patient outcomes reflects true differences in quality of care or if they can be attributed to other factors. Besides providing insight into practice variations, insight into the patient care pathways may support the implementation of routine outcome measurement. The care pathway provides guidance on the timing and frequency of the collection of outcome information as well as shared decision making moments 31. VBHC in rare medical conditions In the Netherlands, hospitals have started implementing VBHC-pilots to improve the value of care for patients with various medical conditions, including different types of cancer and cardiovascular diseases, stroke, chronic kidney disease, and multiple sclerosis 12-14,18,32-34. Little attention, however, has been given to the implementation of VBHC principles in rare diseases such as inherited bleeding disorders. INHERITED BLEEDING DISORDERS Inherited bleeding disorders are caused by abnormalities within the hemostatic process and consist of a heterogeneous group of rare coagulation disorders. In the Netherlands, approximately 2.089 patients are currently receiving care for an inherited bleeding disorder 35. The majority of these patients (72%) are diagnosed with hemophilia A and B, followed by patients with von Willebrand disease, rare bleeding disorders including disorders of the fibrinolytic system, and inherited platelet function disorders 35. Hemophilia A and B Hemophilia A and B are inherited bleeding disorders caused by a deficiency in respectively coagulation factor VIII (FVIII) or factor IX (FIX) 36,37. Hemophilia A is more common than hemophilia B and is estimated to account for
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