233 General discussion 8 recommendations for future research and for the implementation of VBHC in routine care for patients with an inherited bleeding disorder. Recommendations for future research: • Identify and/or develop appropriate (generic) measures and tools to assess bleeding frequency, complications, joint health, and menstruation. • Evaluate both quantitatively and qualitatively the long-term effect of routine outcome measurement on shared decision making, patient experiences, patient empowerment and self-management, patient knowledge on their disease, patient-healthcare professional communication and patient outcomes. • Identify the care pathway for both adults and children with inherited bleeding disorders to assess possible practice variation and combine these care pathways with the patient and healthcare professional experiences with care provision to stimulate continuous learning and quality improvement. Recommendations for the implementation of VBHC in inherited bleeding disorders: • Implement the outcome set defined by the Dutch Outcome-Based Healthcare program for children and adults with the addition of the outcomes bleeding frequency, complications, joint health, and menstruation. • Obtain (inter)national consensus on the implementation of this set, the outcome measures and frequency of administration. • Facilitate training for both healthcare professionals and patients on the interpretation of outcome information and practice variations and how they could be translated into actions for improvement. • Create an (inter)national consortium to share and discuss the outcome information and practice variations to facilitate continuous learning and quality improvement.
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