Validation of a patient‐created, patient‐reported experience measure for inflammatory bowel disease in the United Kingdom

Introduction

Inflammatory bowel disease (IBD) significantly impacts quality of life and has high healthcare contact. Ensuring that patients are experiencing the best care is therefore essential and has been the focus of many quality improvement initiatives. To support this, in collaboration with patients, we developed a patient-reported experience measure for IBD (IBD-PREM) for use in a UK context. This article refers to the validation of this patient-developed measure to ensure it is valid and reliable.

Methods

Using data from the AWARE-IBD study, 287 participants provided data between November 2021 and November 2024. The IBD-PREM as well as the IBD-Control questionnaire was collected at 3-month intervals as well as 2 weeks post baseline. Validation was completed through testing the following aspects: acceptability (response rate and missing data rates), reliability (internal consistency and test-retest reliability), validity (construct and structural validity using factor analysis) and responsiveness (ceiling/floor effects and smallest detectable difference).

Results

High response rates and low missing data demonstrated acceptability of the IBD-PREM. There was also good test-retest reliability (ICC = 0.88). Low ceiling and floor effects demonstrate suitable responsiveness as did the ability to differentiate between patients with active and inactive disease (effect size = 0.62). The confirmatory factor analysis suggested the current domain structure (three domains) is not optimum and factor loadings indicated some potentially redundant items, which is supported by the high internal consistency (α = 0.97).

Conclusions

The patient-developed IBD-PREM is a tool that can be used as a method for assessing the healthcare experiences of IBD patients in the United Kingdom. Superior psychometric properties were found compared to measures developed through traditional researcher-led approaches suggesting the benefit of involving patients early in the methodological process. Further refinement in terms of item reduction and domain restructure should be implemented to optimise the PREM as well as external validity to other contexts.

Patient or Public Contribution

Patients and members of the public were engaged from an early stage in the development of the PREM, contributing directly to the design and content of the IBD-PREM. This article goes on to validate this patient-created measure with input from a patient representative.