Validation study reveals strong reliability and responsiveness of a patient-designed experience measure for inflammatory bowel disease, highlighting the value of patient-led tool design.
Key Points
To validate the psychometric properties, acceptability, and structural reliability of a patient-created, patient-reported experience measure (IBD-PREM) for individuals with inflammatory bowel disease.
Analyzed data from N=287 participants in the UK AWARE-IBD study collected between November 2021 and November 2024 at 3-month intervals and 2 weeks post baseline.
Evaluated acceptability via missing data rates, reliability through internal consistency and test-retest analysis, responsiveness across disease activity levels, and structural validity via confirmatory factor analysis.
IBD-PREM demonstrated high acceptability, strong test-retest reliability (ICC = 0.88), and high internal consistency (Cronbach's α = 0.97).
The instrument showed suitable responsiveness with low ceiling and floor effects and distinguished between active and inactive disease states (effect size = 0.62).
Confirmatory factor analysis indicated that the three-domain model was sub-optimal, highlighting item redundancy that suggests a need for structural refinement.