Shannon van Hoorn

34 Chapter 2 Table 1: Patient-reported outcome measures used in patients with autosomal inherited bleeding disorders. Name of instrument Type Aim Dimensions/ domains Items and scoring Studies (n), references Psychometric qualities* B-IPQ Generic To assess the cognitive and emotional representations of illness Consequences, timeline, personal control, treatment control, identity, concern, understanding, emotional response, and causal factors 9 items rated on a linear scale from 0 to 10; higher scores indicate negative illness perception expect for the dimensions personal control, treatment control and understanding 1 23 CES‐D Generic To assess severity of depressive symptoms Depression 20 items rated on 5-point Likert scale; higher scores indicate greater symptoms 1 34 CHQ-CF87 Generic To assess HRQoL in children General health perceptions, physical functioning, role/social physical functioning, bodily pain, role/social emotional functioning, role/social behavioral functioning, parent impact‐ time, parent impact‐emotional, self‐ esteem, mental health, behavior, family activities, family cohesion, and change in health 87 items rated on a 4- to 6-point Likert scale; higher scores indicate better or more positive health states 1 24 CHQ- PF50 Generic To assess caregiver’s perceptions of their child’s (ages 5-18) HRQoL General health perceptions, physical functioning, role/social physical functioning, bodily pain, role/social emotional functioning, role/social behavioral functioning, parent impacttime, parent impact-emotional, selfesteem, mental health, behavior, family activities, family cohesion, and change in health 50 items rated on a 4- to 6-point Likert scale; higher scores indicate better or more positive health states 1 24

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