Shannon van Hoorn

93 Patient-relevant health outcomes: A delphi study 3 Results of the panel(s) # Health outcome Description Patients and caregivers Healthcare professionals 53 Duration of immune tolerance Time during which immune tolerance is achieved (i.e. the inhibitor is eradicated) × × 54 Time needed to achieve complete or partial immune tolerance induction The time between start of immune tolerance induction and the eradication of the inhibitor × × 55 Recurrences of bleeding episodes because of inadequate treatment Multiple sequential bleeding episodes due to insufficient administration of factor concentrates and/or platelets × × 56 Discomfort of prophylactic treatment Perceived discomfort as a result of preventive treatment with factor concentrates (e.g. pain, inflammation, and administration difficulties) × × 57 Life-threatening complications The occurrence of complications that threaten a person’s life   58 Anxiety The presence of general anxiety by a person with a bleeding disorder × × 59 Anxiety specific to events (e.g. having bleeding episode) The anxiety of a person about the occurrence of specific bleeding disorder-related events ×  60 Depression The presence of feelings of dejection, despondency, loss of interest, and loss of energy, lasting longer than two weeks × × 61 Other mental illnesses The presence of conditions, with the exception of anxiety and depression, that cause severe disturbances in a person’s behavior and thinking × × 62 Chronic inflammation of joints The presence of persistent/chronic inflammation of one or multiple joints × ×

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