49 PROMs in autosomal inherited bleeding disorders: A systematic literature review 2 Author, (year), country Study design and characteristics of population (n; gender; disease type; age) PROMs Measured PROs PROs and conclusions* Xu, Y., et al. (2017). Canada 40 Prospective, single center 102 patients with VWD (78% female) • Type 1: 82 • Type 2: 16 • Type 3: 4 Age (years; SD) • mean: 37.5 (14.8) SF-36 • HRQoL • Vitality • General health • Social functioning • Physical activities • Patients have lower HRQoL compared to normative data in all SF-36 domains (p<0.05), except in the domain role emotional. The largest difference was found in the domains general health, vitality and social functioning (p<0.5). • Patients with different VWD severity have similar scores on HRQoL (p≥0.05). • Patients with VWD type 1, 2 and 3 have similar scores of HRQoL (p≥0.05). • Patients with VWD type 3 have lower scores on physical component summary compared to patients with VWD type 2 (p=0.04). * If provided in the article, the p-values will be shown in the table Abbreviations: B-IPQ, Brief Illness Perception Questionnaire; BMI, Body Mass Index; CES-D, Center for Epidemiological Studies Depression Scale; CHQ-CF87, Child Health Questionnaire Child Form 87; CHQ-PF50, Child Health Questionnaire Parent Form 50; CPD, Congenital blood platelet disorder; D-AIMS2affect, Dutch Arthritis Impact Measurement Scales-2; def, deficiency; GT, Glanzmann’s thrombocytopenia; HA, hemophilia; Haemo-QOL, Hemophilia Quality of Life Questionnaire for Children; HAL, Hemophilia Activity List score; HMB, heavy menstrual bleeding; HUI23S4.15Q, Health Utilities Index Mark 2/3 15-item Questionnaire; HUI3, Health Utilities Index Mark 3; HRQoL, Health-Related Quality of Life; IPAQ, Impact on Participation and Autonomy Questionnaire; IFPD, inherited platelet function disorder; ITP, immune thrombocytopenia; ITQOL, Infant and Toddler Quality of Life Questionnaire; m, meter; MPQ, McGill Pain Questionnaire; PROMs, Patient-reported outcome measures; PROs, Patient-reported outcomes; SD, standard deviation; SF-36, Short-Form 36; UK, United Kingdom; USA, United States of America; VAS, Visual Analog Scale; VWD, von Willebrand disease.
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