Shannon van Hoorn

108 Chapter 3 Results of the panel(s) # Health outcome Description Patients and caregivers Healthcare professionals 138 Support in obtaining and understanding information The support a person experiences in obtaining and understanding information about his/her 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  × 151 Increase in joint bleeds Has the number of joint bleeds increased in a short period of time?  152 Use of on-demand medication † The use of on-demand medication for a person’s bleeding disorder  × All health outcomes in this table were rated by the healthcare professionals panel during the third Delphi round. The health outcomes in bold were rated by the patients and caregivers panel.  The panel achieved consensus on importance; × the panel achieved consensus on unimportance; ≠ no consensus was achieved by the panel. † These health outcomes were added during the second Delphi round. Number 58 was first excluded from the second Delphi round since there was consensus on unimportance.

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