47 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* van Galen, K. P. M., et al. (2017). The Netherlands 26 Prospective, multicenter 48 patient with VWD (40% female), history of joint bleeds • Type 1: 8 • Type 2: 21 • Type 3: 19 Age (years) • range: 18-78 Control group: Patients with VWD and no history of joint bleeds (n=48) D-AIMS2affect HAL IPAQ MPQ VAS pain • Functional limitations • Participation and autonomy • Anxiety • Depression • (Joint) pain • Patients with joint bleeds have more functional limitations compared to controls (p<0.01). • Patients with joint bleeds have similar scores on participation and autonomy compared to controls (p=0.14). • Patients with joints bleeds have similar levels of joint pain (p=0.22), anxiety (p=0.33) and mood (p=0.87) compared to controls. • Patients with joint bleeds and arthropathy have more functional limitations compared to patients without arthropathy (p<0.01). • Patients with joint bleeds and arthropathy have higher joint pain levels compared to patients without arthropathy (p<0.01). • Patients with joint bleeds and arthropathy have lower scores on participation and autonomy compared to patients without arthropathy (p<0.1). • Patients with joints bleeds and arthropathy have similar levels of anxiety (p=0.90) and mood (p=0.14) compared to patients without arthropathy.
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