98 Chapter 3 Results of the panel(s) # Health outcome Description Patients and caregivers Healthcare professionals 116 Perceived family impact The impact of having a child with a bleeding disorder on family life and the ability to engage in family activities × × 117 Perceived family functioning The perceived family functioning from the perspective of parents of a child with a bleeding disorder × × 118 Perceived stress of parents The degree of bleeding disorder-related stress experienced by parents of a child with a bleeding disorder × × 119 Perceived impact on parents’ leisure The impact of having a child with a bleeding disorder on the time a parent can devote to his/her own needs × × 120 Parental concern The degree of bleeding disorder-related concern experienced by parents of a child with a bleeding disorder × 121 Impact on child care The impact of having a child with a bleeding disorder on the ability to find and maintain child care × × 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 124 Menstrual anxiety The presence of menstruation related anxiety by a persons with a bleeding disorder (e.g. fear of leakage) × × 125 Impact of menstruation on daily life The impact of menstrual bleeding on a person’s ability to engage in activities of daily living (including social relations, work/school) 126 Impact of menstruation on mood The impact of menstrual bleeding on a person’s mood × × 127 Impact of menstruation on work/ school absentee-ism The impact of menstrual bleeding on a person’s ability to go to work/school
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