Development and initial validation of a disease-specific bowel continence questionnaire for inflammatory bowel disease patients: the ICIQ-IBD.

BACKGROUND AND AIMS: Faecal incontinence (FI) related to inflammatory bowel disease (IBD) affects up to 74% of patients and is often under-reported in clinical encounters. A previous study found that several important bowel function concerns of patients with IBD are not addressed by existing FI questionnaires, especially differences between symptoms in relapse and remission. We have therefore adapted an existing FI assessment questionnaire specifically for patients with IBD.

METHODS

A total of 190 people participated in this study. Phase 1 (development): the initial draft of the new questionnaire was developed from previously collected data and from results of a modified Delphi survey of IBD clinicians; questions were refined through six rounds of cognitive interviewing (n=24). Phase 2 (validation): the final version was tested (n=166) and retested (n=143) 3-4 weeks later.

RESULTS

Missing data were minimal (1-4%). Weighted kappa analysis showed moderate-to-good agreement for test-retest data. Factor rotational analysis revealed the relationship of questions with each other. The new questionnaire has two domains: 'Symptoms' and 'Quality of Life', recording remission and relapse scores with simple summary scores for each. An additional 10 stand-alone questions address issues of specific concern to patients with IBD. The questionnaire demonstrates the ability to capture changing symptoms and concerns between remission and relapse.

CONCLUSION

The new questionnaire has good content validity and is stable and reliable. Further testing to establish sensitivity to change is needed. The scale can be used by patients, researchers and practitioners to assess severity, fluctuation and impact of IBD-related FI.