Shannon van Hoorn

232 Chapter 8 Not able to investigate influence on continuous learning and quality improvement Due to the many challenges related to the implementation of routine outcome collection in clinical care, I was unable to perform a study on the effect of routine outcome collection on continuous learning and quality improvement. Previous research on the use of outcome information for benchmarking purposes, however, has shown that the potential of continuous learning and quality improvement based on outcome information only is limited, especially in rare diseases with low patient volumes 26-30. In addition, the lack of practice variations in the current care provision for young patients with hemophilia hinders the ability to create a culture of continuous learning and quality improvement based on differences in care provision. Nevertheless, during the identification and visualization of the care pathways young patients and their caregivers follow at the hemophilia treatment centers, I noticed an increasing awareness and interest among healthcare professionals in how other treatment centers have organized their care provision for patients with inherited bleeding disorders. The discussion of the care pathways, patient outcomes, and treatment information in a consortium with nurses and hematologists from each hemophilia treatment center provided the healthcare professionals with new and additional insight into each other’s healthcare processes and experiences. I observed that the transparency on practice variations, the willingness to discuss practice variations and patient outcomes, and the resulting discussion among the involved healthcare professionals in which there was no immediate need to implicate that one center is performing better than the other, could potentially stimulate continuous learning and quality improvement. RECOMMENDATIONS In the research in this thesis, I performed all the steps necessary to facilitate the implementation and evaluation of VBHC for patients with inherited bleeding disorders. This thesis provides a recommendation on which patient-reported outcomes should be measured in the care for patients with inherited bleeding disorders, and which patient-reported outcomes should be used to collect these outcomes. In addition, this thesis provides insight into the current care provision for patients with hemophilia which can be used to guide the collection and use of outcome information. Based on my findings, I have formulated the following

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