225 General discussion 8 Part III: Variation in care provision The third part of this thesis provided information on the possible variation in the care provision for patients with hemophilia in the Netherlands. Insight into the care pathway patients with inherited bleeding disorders follow within the various hemophilia treatment centers is essential to support the implementation of routine outcome measurement. In Chapter 7, I provided an overview of the care pathway young patients with hemophilia and their caregivers follow at five of the six hemophilia treatment centers in the Netherlands. Across the centers, I found that young patients with hemophilia and their caregivers follow similar care trajectories and receive education and information on the same topics regardless of where they are treated. While there are many similarities across the five hemophilia treatment centers, differences were found in 1) type and frequency of consultations, 2) which healthcare professional is involved during each step within the care pathway, 3) organization of the outpatient clinic, 4) option for medication delivery, 5) collaboration with shared care hospitals to administer treatment, 6) use of ultrasound technology to diagnose joint and muscle bleeds, and 7) activities the pediatric team undertakes in case of bleeding episodes and planned medical intervention. REFLECTION ON THE FINDINGS AND CLINICAL IMPLICATIONS Part I: Measuring patient-reported outcomes Relevant patient-reported outcomes Previous research on relevant health outcomes for patients with inherited bleeding disorders has led to the development of four different sets with outcomes that are important for patients with hemophilia (Chapter 4). In this thesis, I identified which health outcomes are important for patients with an inherited bleeding disorder other than hemophilia as this was an unmet need. More specifically, I identified which health outcomes are important for patients with von Willebrand disease, inherited platelet function disorders and rare bleeding disorders (Chapter 2 and 3). Similarities exist between the various outcome sets for patients with hemophilia and the outcomes we have identified as important for patients with von Willebrand disease, inherited platelet function disorders and rare bleeding disorders. It is therefore possible to consolidate these health outcomes into one overall recommended set of relevant health outcomes for all patients with inherited bleeding disorders
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