227 General discussion 8 Both the SF-36 as well as a selection of PROMIS instruments can be used to assess the patient-reported outcomes mentioned within the previously defined set of relevant health outcomes for patients with an inherited bleeding disorder. The use of a selection of PROMIS instruments has, however, several advantages compared to the SF-36. Firstly, PROMIS instruments more adequately and reliably measure the physical, mental, and social health of patients with inherited bleeding disorders compared to the SF-36 12. Secondly, if PROMIS instruments are used to measure patient-reported outcomes, healthcare organizations can select a specific set of generic unidimensional patient-reported outcome domains they wish to assess. In contrast, the SF-36 consists of a fixed combination of patient-reported outcome domains and not all of them might be relevant for patients with inherited bleeding disorders. Moreover, if additional or other patient-reported outcomes are found to be important for patients with inherited bleeding disorders, a PROMIS instrument can be added or removed from the predetermined PROMs set. The use of PROMIS therefore offers a sustainable method of assessing patientreported outcomes in patients with inherited bleeding disorders that can be dynamically and continuously personalized based on new evidence and patient preferences. This thesis therefore supports the conclusion of the Dutch Outcome-Based Healthcare program for both children and adults. In line with this report, I recommend the use of PROMIS instruments as the preferred PROM for assessing patient-reported outcomes in patients with inherited bleeding disorders 8,14. Part II: Patient experiences with patient-reported outcomes Part II focused on identifying how patients experience the routine collection of outcome information, or in other words the implementation of PROMs, in clinical care. When PROMs are implemented in clinical care, patients are asked to complete the PROMs before their scheduled consultation at the outpatient clinic. Ideally, the patients’ answers on the PROMs are then discussed during the consultation with the healthcare professional. Currently, only two hemophilia treatment centers in the Netherlands have implemented the routine collection of outcome information using PROMs in clinical care for patients with inherited bleeding disorders. Due to the many challenges related to the implementation of PROMs, I was unable to meet all prerequisites necessary to perform a study to evaluate the added value of the implementation of VBHC in routine care for patients with inherited bleeding disorders.
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