J Crohns Colitis. 2020 May 17;jjaa100. doi: 10.1093/ecco-jcc/jjaa100. Online ahead of print.

Catherine Le Berre ¹, Mathurin Flamant ^1 2, Guillaume Bouguen ³, Laurent Siproudhis ³, Marie Dewitte ³, Nina Dib ⁴, Elodie Cesbron-Metivier ⁴, Thomas Goronflot ⁵, Matthieu Hanf ⁵, Pierre-Antoine Gourraud ⁵, Elise Kerdreux ², Alexandra Poinas ⁶, Arnaud Bourreille ^1 2, Caroline Trang-Poisson ^1 2

Author information

¹Institut des Maladies de l'Appareil Digestif, Nantes University Hospital, Nantes, France.

²Centre d'Investigation Clinique, Nantes University Hospital, Nantes, France.

³Service des Maladies de l'Appareil Digestif, Rennes University Hospital, Rennes, France.

⁴Service de Gastroentérologie, Angers University Hospital, Angers, France.

⁵Clinique des Données, Nantes University Hospital, Nantes, France.

⁶Direction de la Recherche Clinique, Nantes University Hospital, Nantes, France.

Abstract

Background and aims: Inflammatory bowel diseases (IBD) are disabling disorders. The IBD-Disability Index (IBD-DI) was developed for quantifying disability in IBD patients but is difficult to use. The IBD-Disk is a visual adaptation of the IBD-DI. It has not been validated yet. The main objectives were to validate the IBD-Disk, to assess the clinical factors associated with a change in the score and its variability over time.

Methods: From May 2018 to July 2019, IBD patients from three university-affiliated hospitals responded twice to both IBD-Disk and IBD-DI at 3-12 months intervals. Validation included concurrent validity, reproducibility, and internal consistency. Mean IBD-Disk scores were compared according to clinical factors. Variability was assessed by comparing scores between baseline and follow-up visits.

Results: A total of 447 patients (71% Crohn's disease, 28% ulcerative colitis) were included in the analysis at baseline and 265 at follow-up. There was a good correlation between IBD-Disk and IBD-DI (r = 0.75, p <0.001). Reproducibility was excellent (intra-class correlation coefficient = 0.90), as well as internal consistency (Cronbach's α = 0.89). The IBD-Disk was not influenced by IBD type but was associated with female gender and physician global assessment. Extra-intestinal manifestations, history of resection, elevated CRP and fecal calprotectin also tended to be associated with higher disability. The IBD-Disk score decreased in patients becoming inactive over time.

Conclusions: This study validated the IBD-Disk in a large cohort of IBD patients, demonstrating that it is a valid and reliable tool for quantifying disability for both CD and UC.