Introduction

The IBD-Disk is a widely used, self-administered visual analogue tool for measuring disability in patients with inflammatory bowel disease (IBD). However, it does not capture key aspects of daily life, particularly diet and nutrition, which are critical for IBD patients and may significantly influence disability.

Aims & Methods

This cross-sectional study explored the prevalence of moderate to severe disability in young adults with IBD and evaluated the use of a modified IBD-Disk (mIBD-Disk) to screen for eating disorders and food avoidance. Patients previously diagnosed with IBD during childhood and adolescence (<18 years old), and currently followed at two adult IBD academic centers, were consecutively enrolled. All participants were assessed for disability and screened for eating disorders (ED) and avoidant restrictive food intake disorder (ARFID). Restrictive eating behaviours were evaluated using the Nine Item ARFID Screen (NIAS), which assesses three domains: picky eating, low appetite, and food-related fear with a score >23 suggesting probable ARFID. The Eating Attitudes Test (EAT-26) was used to screen for ED, with a score ≥20 indicating a positive result. Disability was measured using the IBD-Disk with a score >40 indicating moderate to severe disability) and the modified IBD-Disk (mIBD-Disk)¹, which consisted of the original 10 items plus an additional question on dietary habits, for a total of 11 items

Results

A total of 144 patients (50.7% with Crohn’s disease) were included, with a median age of 24 years (range: 21–28), and 54.2% were female. One-third (34.7%) had clinically active disease, and the median BMI was 21.8 (range: 20.1–24.2). Moderate to severe disability, as assessed by the IBD-Disk, was observed in 38.9% (56/144) of the cohort, and the median mIBD-Disk score was 33 (IQR: 16–61). ARFID risk was identified in 24 participants (16.7%), with food-related fear being the most frequent domain (13.2%). The median EAT-26 score was 5 (range: 3–12), with ED present in 17 patients (11.8%). In both univariate and multivariate analyses, moderate to severe disability (OR: 4.03; 95% CI: 1.23–13.17; p = 0.02) and a score greater than 4 on question 11 of the mIBD-Disk related to dietary habits (OR: 3.49; 95% CI: 1.06–11.47; p = 0.04) were independently associated with ARFID risk. ROC curve analysis showed that the mIBD-Disk Q11 had an 82% diagnostic accuracy (95% CI: 0.73-0.91) for predicting ARFID.

Conclusion

Patients diagnosed with IBD in childhood and adolescence have an increased prevalence of moderate to severe disability. Integrating the mIBD-Disk into clinical practice could provide an effective tool to identify patients at risk for eating behaviours and food avoidance, supporting timely referrals for nutritional and psychological interventions

References

Nardone OM, et al. Dig Liver Dis. 2025 Mar;57(3):753-761. doi: 10.1016/j.dld.2024.11.004. . PMID: 39617658.