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Correlation between patient-determined inflammatory bowel disease severity and the inflammatory bowel disease severity index

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N Z Med J. 2026 Mar 13;139(1631):76-92. doi: 10.26635/6965.7229.

ABSTRACT

AIM: The inflammatory bowel disease severity index (IBD-DSI) aims to describe inflammatory bowel disease (IBD) severity over the duration of disease. We aimed to correlate the IBD-DSI with a patient-completed disease severity score (PCDSS). We also aimed to investigate whether individual factors such as psychological measures or clinical characteristics moderate this correlation.

METHODS: This multicentre trial involved gastroenterologists completing the IBD-DSI and Harvey-Bradshaw Index or Simple Clinical Colitis Activity Index for each participant while patients completed a self-reported IBD severity score and psychological questionnaires. The excess severity score (ESS) was calculated by subtracting the IBD-DSI from the PCDSS.

RESULTS: One hundred and sixty-four patients with IBD participated (98.2% response rate; average age 41.2 years; 105 [62.9%] female; 100 [59.9%] Crohn’s disease) and 164 IBD-DSI were completed. The IBD-DSI and PCDSS were positively correlated (r=0.44, r2=0.19, p<0.001) although the mean ESS was 29.0 (23.2). The relationship between the scales is reflected in the equation: PCDSS=39.53+0.59*IBD-DSI. There were larger discrepancies at the lower end of IBD-DSI. After controlling for IBD-DSI, previous colectomy (p=0.03), any IBD or bowel-related surgery (p=0.01) and ulcerative colitis extent of disease (p=0.049) were associated with ESS while 5-aminosalicylic acid use (p=0.01) was negatively associated with ESS.

CONCLUSIONS: IBD-DSI and PCDSS are significantly positively associated with each other and with larger discrepancies at the lower end of the IBD-DSI. Possible contributing factors to the discrepancy are floor effects, regression to the mean and patients putting different implicit weights on particular factors than the IBD-DSI does.

PMID:41818761 | DOI:10.26635/6965.7229

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