89 Patient-relevant health outcomes: A delphi study 3 Table S2: Long-list of health outcomes for first Delphi round. Results of the panel(s) # Health outcome Description Patients and caregivers Healthcare professionals 1 General health A person’s state of physical, mental, and social wellbeing × × 2 Vitality The vitality of the patient × × 3 Number of healthy life years Expected number of years spent in good health × × 4 Changes in vital signs The change (improvement/deterioration) in the body’s life-sustaining functions × × 5 Total number of bleeding episodes The total number of bleeding episodes including severe, life threatening and intracranial bleeds × 6 Total number of severe bleeding episodes The total number of severe bleeding episodes a person has experienced × 7 Total number of lifethreatening bleeding episodes The total number of life-threatening bleeding episodes a person has experienced 8 Total number of intracranial bleeds The total number of intracranial bleeds a person has experienced × 9 Severity of the bleeding episode The severity of the bleeding episode 10 Frequency of bleeding episodes The number of bleeding episodes within a year 11 Number of bleeding episodes per year that require treatment The number of bleeding episodes that require treatment per year 12 Response to treatment How well does a person respond to treatment 13 Total number of exposure days The total number of days in which a person is exposed to factor concentrates or platelets × ×
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