48 Chapter 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. (2015). Netherlands 27 Prospective, multicenter 184 patients with VWD and a history of joint bleeds Age (years) • range: 16-83 Control group: Patients with VWD and no history of joint bleeds (n=620) SF-36 • HRQoL • (Joint) pain • Patients with self-reported joint bleeds have lower HRQoL compared to patients without self-reported joint bleeds, especially in the domains vitality, pain, general health, mental health, social functioning and role emotional. • Patients with self-reported joints bleeds and without selfreported joints bleeds have both high scores on the domain physical functioning. • (Self-reported) joint damage seems to be largely responsible for the association between joint bleeds and lower HRQoL. • Patients with a history of joint bleeds have more pain compared to controls (p=0.008). Van Galen, K. P. M., et al. (2017). The Netherlands 28 Prospective, multicenter 96 patients with VWD (40% female) • Type 1: 28 • Type 2: 46 • Type 3: 22 Age (years) • mean: 46 • range: 18-80 HAL • Functional limitations • Patients with > 5 joint bleeds have more functional limitations compared to those with ≤ 5 joint bleeds (p<0.01).
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