105 Patient-relevant health outcomes: A delphi study 3 Results of the panel(s) # Health outcome Description Patients and caregivers Healthcare professionals 17 Impact of treatment on daily life The impact of treatment on a person’s daily life × 18 Impact of an alteration in treatment on daily life The impact an alteration in treatment (e.g. doses change, change in type of factor concentrates) has on a person’s daily life × 22 Joint damage The presence of joint damage due to joint bleeding episodes 23 Number of affected joints The number of joints that are affected due to joint bleeding episodes × 25 Presence of target joints The presence and number of target joints 26 Alteration in joint functional status The alteration (improvement/deterioration) in joint functional capacity to perform functions of daily living 27 Age at diagnosis The age at which the bleeding disorder was diagnosed by a hematologist × 28 Time between bleeding onset and administration of treatment The time between bleeding onset and the administration of factor concentrates and/or platelets ≠ 38 Pain interference The presence of pain and the interference with daily life 47 Number of days lost (work/ school) The total number of days lost from work or school because of bleeding disorder-related hospital visits per year × ≠ 48 Treatment side effect The occurrence of treatment side effects including inhibitor status, allergic reactions 50 Allergic/ hypersensitivity reactions Allergic reactions to treatment × 51 Inhibitor development The presence of antibodies against factor concentrates and/or platelets
RkJQdWJsaXNoZXIy MTk4NDMw