104 Chapter 3 Table S4: List of health outcomes for third Delphi round Results of the panel(s) # Health outcome Description Patients and caregivers Healthcare professionals 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 × 14 Frequency of infusions/ factor or platelet use or other hemostatic medication The number of infusions/consumptions of factor concentrates or platelets or other hemostatic medication within a certain time period. × 15 Time until recovery The duration of recovery after a bleeding episode (the presence of long-term limitations) × 16 Time until return to physical activities after a bleeding episode The duration of engagement in similar physical activities prior to the bleeding episode ×
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