Inflammatory Bowel Disease-related Behaviours [IBD-Bx] questionnaire: Development, validation, and prospective associations with fatigue

BACKGROUND AND AIMS: Disease-related behaviours that may maintain or worsen symptom burden remain largely unexplored in inflammatory bowel disease (IBD). In this study, we developed and validated an instrument assessing IBD-related, modifiable behaviours and explored which behaviours prospectively correlate with fatigue, a debilitating and common symptom in IBD.

METHODS: Initially, 72 items reflecting IBD-related behaviours were generated based on literature review and input from clinicians and people diagnosed with IBD. During wave 1, 495 IBD patients rated to what extent each behaviour was applicable to them. Additionally, disease activity, fatigue, IBD-related concerns, and psychological variables were assessed. During a follow-up visit 4-12 weeks later (wave 2), a random selection of 92 patients from wave 1 completed the measures assessing the IBD-related behaviours, disease activity, and fatigue once more.

RESULTS: A principal component analysis with oblique rotation revealed seven components in the 72 IBD behaviours, which could be interpreted as: (1) Avoiding food and activities, (2) Access to toilets, (3) Avoidance of sex, (4) Cognitive avoidance, (5) Not sharing with others, (6) Alternative treatments, and (7) Disease management. Each component was reduced to 3-5 representative items, resulting in a final, 25-item IBD-Bx questionnaire showing good concurrent validity (alphas > .63) and reliability. Almost all components were cross-sectionally related to levels of fatigue. Avoiding Food and Activities and Access to Toilets significantly predicted fatigue at wave 2 when controlling for baseline fatigue.

CONCLUSIONS: The IBD-Bx is a valid and reliable questionnaire of IBD-related behaviours, some of which predict future fatigue burden.