Cure8 research brief
Patient-centered measures help clinics track and improve care experiences important to people with IBD. A validated patient-developed PREM could better reflect patient priorities and support quality improvement in UK IBD services.
Adult IBD patients and advocates, clinicians and service managers, and researchers developing patient-reported measures.
This paper reports validation of a patient-developed patient-reported experience measure for IBD (IBD‑PREM) using data from the AWARE‑IBD study in the UK.
The validation assessed acceptability (response and missing-data rates), reliability (internal consistency, test–retest ICC = 0.88), construct and structural validity (factor analysis), and responsiveness (ceiling/floor effects, ability to distinguish active vs inactive disease).
The authors found high response rates, strong test–retest reliability, low ceiling/floor effects, and that the IBD‑PREM differentiated between active and inactive disease; confirmatory factor analysis suggested the current three-domain structure could be improved and item reduction may be warranted.
The measure was co-developed with patients and the manuscript emphasizes benefits of early patient involvement compared with traditional researcher-led instruments. The authors recommend further refinement (item reduction and domain restructuring) and testing of external validity in other settings.
Findings come from a validation study using AWARE‑IBD cohort data (Nov 2021–Nov 2024) and are summarized in the article abstract; the authors note the need for further refinement and external validation.
Review the original publication for the complete reporting, methods, and context.
Funding disclosed by the source: National Institute for Health and Care Research - NIHR303356; National Institute for Health Research on an NIHR pre-doctoral fellowship - NIHR303356; National Institute for Health and Care Research - NIHR306419; Health Foundation - FR-000002444; Health Foundation as part of the Common Ambition Programme - FR-000002444; NIHR doctoral fellowship - NIHR306419
This Cure8 brief is based on source text from the linked article. Cure8 is informational only and is not a substitute for professional medical advice, diagnosis, or treatment.
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