101 Patient-relevant health outcomes: A delphi study 3 Table S3: List of health outcomes for second Delphi round. Results of the panel(s) # Health outcome Description Patients and caregivers Healthcare professionals 2 Vitality* The extent to which a person feels powerful and energetic, i.e. a person’s vitality × × 27 Age at diagnosis The age at which the bleeding disorder was diagnosed by a hematologist 42 Frequency of outpatient visits The number of bleeding disorder-related outpatient visits per year × × 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 ≠ ≠ 68 Blood infections The occurrence of blood infection (sepsis) × × 73 Return to same work A person’s ability to continue the same work after sick leave × × 88 Fertility The extent to which a person is able to have children × × 91 Self-image The way a person looks at himself; the thoughts, ideas and judgements that a person has about himself × × 92 Identification as a patient The extent to which a person identifies him/herself as a patient with a bleeding disorder × × 94 Autonomy The degree of autonomy that a person experiences × 95 Needle fear The extent to which a person is afraid of needles × × 101 Fatigue General feeling of being tired 102 Ability to participate in social roles and activities A person’s ability to fulfil his/her role in social settings and to maintain meaningful relationships with partners and family × × 103 Satisfaction with social roles and activities A person’s satisfaction with being able to perform his/her social roles and activities × × 106 Social isolation The extent to which a person feels excluded by others × ×
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