Shannon van Hoorn

79 Patient-relevant health outcomes: A delphi study 3 Consensus achieved by panel(s) # Health outcomes Definition Patients and caregivers Healthcare professionals 130 Impact of menstruation on the ability to enjoy life The impact of menstrual bleeding on a person’s ability to enjoy life  131 Impact of menstruation on sleep The impact of menstrual bleeding on a person’s sleep pattern  Pain 38 Pain interference The presence of pain and the interference with daily life  Knowledge, concerns and impact of having a bleeding disorder 137 Knowledge about the bleeding disorder A person’s level of knowledge about the possible consequences and risk associated with a bleeding disorder  140 Concerns about the bleeding disorder A person’s concern about his/her bleeding disorder  147 Concerns about inheritance of the bleeding disorder The extent to which a person is concerned about the inheritance of his/her bleeding disorder  148 Concerns about pregnancy/ miscarriage/giving birth The extent to which a person is concerned about a possible pregnancy/miscarriage or giving birth  136 Ability to maintain basic self-care The extent to which a person is able to continue to care for himself/herself as he/she gets older  110 Impact on emotions The impact of the bleeding disorder on a person’s emotions  27 Age at diagnosis The age at which the bleeding disorder was diagnosed by a hematologist 

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