Shannon van Hoorn

97 Patient-relevant health outcomes: A delphi study 3 Results of the panel(s) # Health outcome Description Patients and caregivers Healthcare professionals 103 Satisfaction with social roles and activities A person’s satisfaction with being able to perform his/her social roles and activities ≠ ≠ 104 Relationship with peers The quality of the relationships with friends and other acquaintances × × 105 Company The perceived availability of persons with whom a person can engage in social activities × × 106 Social isolation The extent to which a person feels excluded by others ≠ ≠ 107 Emotional support The extent to which a person can express his concerns and feelings to others ≠ ≠ 108 Practical support The extent to which a person has access to and accepts help from others, e.g. with the household ≠ ≠ 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 ≠ ≠ 111 Impact on sexual health/intimacy The impact of the bleeding disorder on a person’s sexual health and intimacy ≠ ≠ 112 Impact on family life The impact of the bleeding disorder on pursuit of a family life, including but not limited to childbearing, romantic/ sexual relationships and marriage × × 113 Impact on fatherhood/ motherhood The impact of the bleeding disorder on the choice whether or not to have children and the number of children × × 114 Disease impact on caregivers and/or partners The impact of the bleeding disorder on the caregiver and/ or partner of a person with a bleeding disorder × × 115 Perceived burden of the bleeding disorder The burden a person experiences from his/her bleeding disorder × 

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