45 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* Kulkarni, A., et al. (2006). UK 32 Prospective, single center 14 patients with FVII deficiency (all female) Age (years) • median: 35 • range: 15-50 Control group: Female staff at Royal Free Hospital (n=23) Ad hoc questionnaire • HRQoL • General health • Dysmenorrhea • Patients have lower HRQoL compared to controls, especially on the domain of general health (p<0.005) and daily activities (p=0.0002). • Patients have more dysmenorrhea (p=0.019) and interference of dysmenorrhea with daily work (p=0.001) compared to controls. • During menstruation patients have lower HRQoL compared to controls (p=0.03). Marshall, A. L., et al. (2019). USA 36 Prospective, single center 82 VWD (all female) • Type 1: 58 • Type 2: 22 • Type 3: 3 Age (years) • median: 54 Ad hoc questionnaire • Reproductive health experience • Activities and lifestyle • Patients primarily use negative adjectives to describe HMB and reported a negative impact on their academic, home and sexual life. • Patients primarily use negative adjectives to describe their reproductive experiences.
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