68 Chapter 3 ABSTRACT Background To assess patient value, it is essential to regularly measure health outcomes that matter to patients. It is currently unknown which health outcomes are important for patients with autosomal inherited bleeding disorders. Objective This study aimed to assess which health outcomes are important for patients with autosomal inherited bleeding disorders, consisting of von Willebrand disease, platelet function disorders and rare bleeding disorders, as seen from the patient, caregiver and healthcare professional perspectives. Methods Two panels, one consisting of patients and caregivers, and one consisting of healthcare professionals participated in a Delphi process. A list of 146 health outcomes was identified from literature. During three rounds, both panels rated the importance of health outcomes on a five-point Likert scale. A health outcome was considered important by a panel if it received a median score of five with a interquartile range ≤1. Results In total, 13 patients, 10 caregivers and 19 healthcare professionals participated in the Delphi study. Both panels reached consensus on the importance of health outcomes related to bleeding episodes, life-threatening complications, and intensity and impact of menstruation. Patients and caregivers additionally reached consensus on the importance of health outcomes related to menstruation and the impact of the bleeding disorder on their daily lives. Healthcare professionals reached consensus on the importance of health outcomes related to treatment, joint health and pain. Conclusion In this study, health outcomes were identified that should be considered when implementing value-based healthcare in the care for patients with autosomal inherited bleeding disorders.
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