Shannon van Hoorn

243 Addendum A 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 joints and muscle bleeds, and 7) activities the pediatric team undertakes in case of bleeding episodes and planned medical intervention. This thesis ends with Chapter 8, the general discussion. This chapter provides an overview and discussion of the main findings, followed by the methodological limitations, recommendations for future research and clinical practice, and conclusion. CONCLUSION 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 this 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 reflect 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. This research could focus on how and if the routine collection of outcome information can improve shared decision making, continuous learning and quality improvement, but also on how and if it can contribute to improved patient empowerment, outcomes, experiences, and perceived quality of care.

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