Shannon van Hoorn

84 Chapter 3 facilitate the implementation of value-based healthcare and value assessment by patients with inherited bleeding disorders. CONCLUSION This Delphi consensus study identified which health outcomes are important for patients with autosomal inherited bleeding disorders as seen from the patient, caregiver and healthcare professional perspective. Both the patients and caregivers panel and healthcare professionals panel reached consensus on the importance of six health outcomes related to bleeding episodes, complications and menstruation. In addition to these health outcomes, the patients and caregivers panel and the healthcare professionals panel each reached consensus on a different set of important health outcomes, highlighting the differences between the patient and caregiver, and healthcare professional perspective. The identified health outcomes should be considered when implementing value-based healthcare for patients with autosomal inherited bleeding disorder, although further operationalization is needed. Essentials • To improve patient experience, it is essential to measure health outcomes that matter to patients. • We identified health outcomes important for patients with inherited bleeding disorders. • Patients, caregivers and healthcare professionals prioritized different health outcomes. • The identified health outcomes should be considered when implementing value-based healthcare. Keywords Value-based healthcare; Von Willebrand diseases; Consensus; Caregivers; Menstruation Author contributions E.S. van Hoorn, H.F. Lingsma, M.H. Cnossen and S.C. Gouw designed the study. M.H. Cnossen organized caregiver inclusion. E.S. van Hoorn collected and analyzed the data, and drafted the manuscript. H.F. Lingsma, M.H. Cnossen and S.C. Gouw critically reviewed the manuscript and provided important intellectual input. All authors reviewed and approved the final version.

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