Shannon van Hoorn

106 Chapter 3 Results of the panel(s) # Health outcome Description Patients and caregivers Healthcare professionals 52 Inhibitor recurrence The repeated development of antibodies against factor concentrates and/or platelets  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 × 83 Influence of fear for bleedings on sports participation The influence of fear with regard to anticipated bleeding episodes on sports participation × 94 Autonomy The degree of autonomy that a person experiences × 101 Fatigue General feeling of being tired × × 109 Impact of residency The impact of the bleeding disorder on a person’s residential location ≠ × 110 Impact on emotions The impact of the bleeding disorder on a person’s emotions  × 115 Perceived burden of the bleeding disorder The burden a person experiences from his/her bleeding disorder × 120 Parental concern The degree of bleeding disorder-related concern experienced by parents of a child with a bleeding disorder ≠ 122 Duration and frequency of menstrual bleeding The duration and frequency of menstrual bleeding ×  123 Intensity of menstrual bleeding Number of times a person needs to change themselves per day  

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