231 General discussion 8 comparable to that observed in patients with severe hemophilia19. Based on the results of previous validation studies in hemophilia, I still conclude that PROMIS instruments adequately measure patient-reported outcomes in all patients with inherited bleeding disorders. The rarity of inherited bleeding disorders makes them difficult to study. All studies, however, included a distribution of patients across the three bleeding disorders that is comparable to the distribution of these diseases in the general population. I therefore do not believe that the difficulties encountered during patient recruitment influenced our results in such a manner that the conclusion would differ if more patients were recruited. Challenges during the implementation and evaluation of VBHC No detected influence on shared decision making In this thesis (Chapter 6) and our ongoing study on the implementation of routine outcome collection in care for patients with lung cancer, I did not find any positive or negative effect of its implementation on shared decision making, patient-healthcare professional communication or patient experiences. This finding is contradictory to previous studies which have suggested that the collection and use of outcome information in the consultation room can improve shared decision making and patient-healthcare professionals communication through the identification and discussion of more relevant symptoms and health-related quality of life domains during the consultation 20-22. This discrepancy might partly be explained by the relatively low completion rate of the PROMs, and the evaluation instruments used (e.g., self-developed questionnaire/interview guide, 9-item shared decision making questionnaire). More importantly, this discrepancy might be explained by the general observation that PROMs data are not always discussed during the consultation 23. To obtain any added (long-term) value from the routine collection of outcome information, it is not sufficient to only measure PROMs. The patients’ answers on the PROMs should be used and discussed during the consultation, and good patient-healthcare professional communication is essential to obtain all possible advantages of the routine collection of outcome information 18,21. Both patients and healthcare professionals should therefore receive training to increase their awareness on the importance of patientreported outcomes in the management of (chronic) diseases and on how the data can potentially be used to improve patient value 18,24,25.
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