Shannon van Hoorn

35 PROMs in autosomal inherited bleeding disorders: A systematic literature review 2 Name of instrument Type Aim Dimensions/ domains Items and scoring Studies (n), references Psychometric qualities* D-AIMS2affect Disease- specific To measure changes in global health, pain, mobility and social function in patients with arthritis Mobility, physical activity, dexterity, household activity, social activities, activities of daily living, pain, depression, anxiety, arm function, social support, and work 77 items; higher scores indicate better function 1 26 HaemoQOL Disease- specific To assess HRQoL in children with haemophilia Physical health, feeling, view of yourself, family, friends, other people, nursery school/kindergarten, treatment, perceived support, coping, relationships, and future 21, 64 or 77 items on a 5-point Likert scale; higher scores indicate more impairment and poorer quality of life 1 42 HUI23S4.15Q Generic To assess health status and HRQoL Sensation, mobility, self-care, emotion, cognition, and pain (HUI2). Vision, hearing, speech, ambulation, dexterity, emotion, cognition, and pain (HUI3) 14 items with different levels (from 3 to 6); higher scores indicate better HRQoL 1 38 HUI3 Generic To assess health status Vision, hearing, speech, ambulation, dexterity, emotion, cognition and pain 8 items with different levels (5 or 6); higher score indicate better HRQoL 1 38, 39 HAL Disease- specific To determine how bleeding episodes and progressive joint impairments impact selfperceived functional abilities Upper extremity activities, basic lower extremity activities, and complex lower extremity activities 42 items across 7 domains rated on a 6-point Likert scale; higher scores indicate greater functional status 2 26, 28 Construct validity HAL/HJHS: rs=-0.71 HAL/SF-36 physical functioning: rs=0.65 HAL/SF-36 physical component summary: rs=0.62 HAL/IPAQ: rs=0.69

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