Intern Med J. 2025 Jan 11. doi: 10.1111/imj.16634. Online ahead of print.

Joseph L Pipicella ^1 2 3, Bonita Gu ^2 4, Jack McNamara ^3 4, William Wilson ^5 6, Lyle J Palmer ⁷, Susan J Connor ^1 2 3 4, Jane M Andrews ^1 8 9

Author information

¹Crohn's Colitis Cure, Sydney, New South Wales, Australia.

²Medicine & Health (South Western Sydney Clinical School), University of New South Wales, Sydney, New South Wales, Australia.

³Gastroenterology, Hepatology and Inflammatory Bowel Disease Research Group, Ingham Institute for Applied Medical Research, Liverpool, New South Wales, Australia.

⁴Department of Gastroenterology and Hepatology, Liverpool Hospital, Sydney, New South Wales, Australia.

⁵Department of Surgical Specialties and Anesthesia, Lyell McEwin Hospital, Adelaide, South Australia, Australia.

⁶Medical Information Office, SA Health, Adelaide, South Australia, Australia.

⁷School of Public Health, University of Adelaide, Adelaide, South Australia, Australia.

⁸Gastroenterology, General & GI Surgery, Central Adelaide Local Health Network, Adelaide, South Australia, Australia.

⁹Faculty of Health Sciences, School of Medicine, University of Adelaide, Adelaide, South Australia, Australia.

Abstract

Background: The burden of inflammatory bowel disease (IBD) is often reported on from a system or cost viewpoint. We created and explored a novel patient-perceived burden of disease (PPBoD) score in a large Australasian cohort.

Aim: To create and explore a novel patient-perceived burden of disease (PPBoD) score in a large Australasian cohort, and correlate PPBoD scores with demographics, disease and treatment factors.

Methods: The Crohn Colitis Care Registry was interrogated in October 2023. Data from adults with IBD with an outpatient care encounter in the last 14 months among 17 centres were included. A novel PPBoD score was designed for ulcerative colitis (UC), Crohn disease (CD) and IBD-unclassified (IBDU). Correlations between PPBoD scores and demographics, disease and treatment factors were examined.

Results: Of those with adequate data, 46.7% (2653/5685) had no PPBoD, 34.6% (1969/5685) had mild, 11.3% (641/5685) had moderate and 7.4% (422/5685) had significant PPBoD. New Zealanders were more likely to have higher PPBoD compared to Australians (P = 0.047). Greater PPBoD was seen in patients with CD and IBDU compared to patients with UC (P < 0.001) and females were more likely to have significant PPBoD (8.7%) than males (6.1%) (P < 0.001). People with no or mild PPBoD were more likely to be on advanced therapies (55.7% and 59.5% respectively) than those with significant PPBoD (46.3%) (P < 0.001). The proportion of people on advanced therapies in Australia was higher than in New Zealand (61.2% vs 38.5% respectively, P < 0.001). Steroid usage was significantly higher in people with greater PPBoD (significant BoD 7.1% vs no BoD 1.1%; P < 0.001).

Conclusion: Most of this real-world care cohort had no or mild PPBoD. Data suggest that higher PPBoD levels may be resolved by appropriate therapeutic escalations.