38 Chapter 2 Table 2: Overview of study characteristics, the used patient-reported outcome measures and findings on patient-reported outcomes of the included studies on autosomal inherited bleeding disorders Author, (year), country Study design and characteristics of population (n; gender; disease type; age) PROMs Measured PROs PROs and conclusions* Atiq, F., et al. (2019). The Netherlands 22 Prospective, multicenter 789 patients with VWD (61% female) • Type 1: 474 • Type 2: 301 • Type 3: 23 Age mean (years; SD): • Type 1: 40 (20) • Type 2: 38 (21) • Type 3: 29 (20) Ad hoc questionnaire SF-36 • Sport participation • Physical activity • The majority of patients (69.3%) participated in sports and there is no difference in sport participation between patients with VWD type 1,2 and 3 (p=0.52). • Reasons not to participate in sports are lack of time (47.4%), lack of motivation (27.4%), physical limitations (26.9%), fear of bleeding (6.9%) or other reasons (8.6%). • Age and VWD type 3 are independently associated with no sport participation due to fear of bleeding (p<0.05). • Age, BMI and VWD type 3 are independently associated with no sport participation due to physical limitations (p<0.01) • Age, female sex, BMI and VWD type 3 are independently associated with severe limitations to walk 1000 m (p<0.05). Barr, R. D., et al. (2003). Canada 38 Prospective, single center 28 patients with VWD (64% female) • Type 1: 18 • Type 2: 9 • Type 3: 1 Age (years) • mean: 33.6 • range: 13-73 HUI23S4E.15Q HUI3 • HRQoL • Physical activity • Pain • Patients have lower health status and poorer HRQoL compared to normative data, especially on the domains emotion, cognition and pain (p<0.05). • Patients have no significant limitations in physical activity. • Women have lower HRQoL compared to men, especially on the domains of emotion, cognition and pain (p<0.05).
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