244 Addendum Key messages Part I: Measuring patient-reported outcomes • Patients, caregivers, and healthcare professionals identified different health outcomes to be important for patients with von Willebrand disease, inherited platelet function disorders and rare bleeding disorders. • To facilitate continuous learning and quality improvement across medical conditions, I recommend the implementation of the generic outcome set as defined by the Dutch Outcome-Based Healthcare program, supplemented with the health outcomes related to bleeding frequency, complications, joint health, and menstruation in routine clinical care for patients with inherited bleeding disorders. • PROMIS instruments are the preferred PROM for assessing patient-reported outcomes in patients with inherited bleeding disorders. Part II: Patient experiences with patient-reported outcomes • Patients are willing to complete a PROM before their consultation. • To obtain any added value from the routine collection of outcome information, the patients answers on the PROM should be used and discussed during the consultation. • Patients and healthcare professionals should receive training to increase their awareness of the importance of patient-reported outcomes in the management of (chronic) diseases and on how the data can potentially be used to improve patient value. Part III: Variation in care provision • 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 in the Netherlands. • The discussion of practice variations, and potentially outcome information and patient and healthcare professionals experiences with care provision, among healthcare professionals could potentially stimulate continuous learning and quality improvement.
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