73 Patient-relevant health outcomes: A delphi study 3 Table 1: Demographics of the patient and caregiver panel during the first Delphi round. Patients n=13 Caregivers n=10 Gender* Male 3 (23%) 0 Female 10 (77%) 7 (100%) Age* Median 41 38 Interquartile range 36-45 34-43 Educational level* Lower secondary education 2 (15%) 0 Higher secondary education 6 (46%) 4 (57%) Bachelor or equivalent education 4 (31%) 1 (14%) Master, doctoral or equivalent education 1 (8%) 2 (29%) Type of bleeding disorder*† Von Willebrand disease 10 (77%) 5 (56%) Fibrinogen deficiency 1 (8%) 0 Factor VII deficiency 0 1 (11%) Factor XI deficiency 0 1 (11%) Factor XIII deficiency 0 1 (11%) Inherited platelet function disorder 2 (15%) 1 (11%) Self-reported severity of the bleeding disorder*† Severe 3 (23%) 1 (11%) Moderate 3 (23%) 2 (2250 Mild 6 (46%) 6 (67%) Unknown 1 (8%) 0 Use of medication*† Yes 10 (77%) 2 (25%) No 3 (23%) 6 (75%) Currently receiving treatment at a HTC*† Yes 9 (69%) 3 (43%) No 3 (23%) 4 (57%) No treatment necessary 1 0 Data on ethnicity were not collected because it is not allowed under Dutch law. * These questions contained missing values for the caregivers † Caregivers answered these questions about their child Abbreviation: HTC, hemophilia treatment center.
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