224 Chapter 8 generic and can be applied across medical conditions, which could stimulate continuous learning and quality improvement based on outcomes information. To achieve all the advantages PROMIS has to offer to the field of inherited bleeding disorders, I proposed that PROMIS needs to become the national and international standard for generic outcome measurement in persons with inherited bleeding disorders. 7 In Chapter 5, I investigated if these PROMIS instruments are suitable to measure patient-reported outcomes in patients with von Willebrand disease, inherited platelet function disorders and rare bleeding disorders. I assessed a selection of PROMIS instruments, including several PROMIS CATs, the short form Anger and the fixed scale Global Health. I found that the selected PROMIS instruments are a feasible, valid, and reliable alternative for the SF-36 in patients with von Willebrand disease, inherited platelet function disorders and rare bleeding disorders. The PROMIS CATs Physical Function, Pain Interference, Fatigue, Anxiety, Depression, Ability to Participate in Social Roles and Activities, and Satisfaction with Social Roles and Activities, can be used to draw reliable conclusions on individual patient level and can therefore be implemented in routine clinical care. Part II: Patient experiences with patient-reported 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.
RkJQdWJsaXNoZXIy MTk4NDMw