77 Patient-relevant health outcomes: A delphi study 3 Table 3: Health outcomes that are important for patients with autosomal inherited bleeding disorders Consensus achieved by panel(s) # Health outcomes Definition Patients and caregivers Healthcare professionals Bleeding episodes 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 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 life-threatening bleeding episodes The total number of life-threatening bleeding episodes the 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 Treatment 12 Response to treatment How well does a person respond to treatment 152 Use of on-demand medication The use of on-demand medication for a person’s bleeding disorder 48 Treatment side effects The occurrence of treatment side effects including inhibitor status, allergic reactions 50 Allergic/ hypersensitivity reactions Allergic reactions to treatment 51 Inhibitor development The presence of antibodies against factor concentrates and/or platelets 52 Inhibitor recurrence The repeated development of antibodies against factor concentrates and/or platelets
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