242 Addendum In Chapter 4, I introduced and described the possible advantages of using patient-reported outcomes measurement information system (PROMIS) instruments to assess the identified relevant patient-reported outcomes. PROMIS has several advantages compared to more traditional PROMs including the application of Computer Adaptive Tests (CATs). In theory, the use of CAT lowers the burden of outcome assessment by administrating a limited number of more relevant questions with a higher reliability. In Chapter 5, I investigated if these PROMIS instruments are suitable to measure patientreported outcomes in patients with von Willebrand disease, inherited platelet function disorders and rare bleeding disorders. I found that the assessed PROMIS instruments are a feasible, valid, and reliable alternative for the SF-36 in patients von Willebrand disease, inherited platelet function disorders and rare bleeding disorders. PART II: PATIENT EXPERIENCES WITH PATIENTREPORTED OUTCOMES The second part of this thesis focused on identifying how patients experience the routine collection of outcome information in clinical care. Chapter 6 provided insight into the experiences of HIV patients on the implementation of a generic PROM, the PROMIS fixed scale Global Health, at the HIV outpatient clinic of the Erasmus University Medical Center (Erasmus MC). Patients were primarily positive about the PROM and are willing to complete the PROM before their consultation if this can give the healthcare professional additional information about how they are feeling. Some patients, however, did not see the added value of completing a PROM, especially if they do not experience any health problems. In addition, the patients mentioned several barriers to completing the PROM such as being unable to access the questionnaire due to computer difficulties, uncertainty about the goal and purpose of the PROM, and a general perception that questionnaires are too tedious to complete. 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. 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. I found that young patients with hemophilia and their caregivers follow similar care trajectories and receive education and
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