Abstract

Abstract Background The prevalence and burden of inflammatory bowel disease (IBD) including ulcerative colitis (UC) is rising globally. We present a novel score to evaluate patient-perceived burden of disease (PPBoD) in UC, which we applied to a large real-world Australasian cohort. Methods The Crohn’s Colitis Care (CCCare) Clinical Registry was interrogated in October 2023. Adults with ulcerative colitis (UC) across 17 IBD centres who had an outpatient encounter in the last 14 months were included. A novel PPBoD score was created for UC, including patient-reported components from the Mayo Score (stool frequency and rectal bleeding) as well as general wellbeing, urgency and nocturnal bowel motions. The PPBoD was calculated as detailed in Figure 1. A score of 0 was defined as no PPBoD, 1-2 as mild, 3-4 as moderate and ≥ 5 as significant PPBoD. The correlation between PPBoD and demographics, disease and treatment factors was assessed. Results A total of 2507 people with UC (41.0%) were identified with a clinical assessment in the last 14 months; 92.2% of whom (n = 2311) had adequate data to calculate the PPBoD. In this cohort > 80% had either no or only mild PPBoD (Table 1). Age, gender and BMI did not vary significantly between PPBoD categories. People with lower PPBoD were more likely to be on advanced therapies and had lower rates of steroid use. There was no significant difference in the use of immunomodulators and aminosalicylates across PPBoD categories. The cohort was geographically dispersed across Australia (n = 1786, 77.3%) and New Zealand (n = 525, 22.7%). There was significantly higher PPBoD in New Zealand, but notably those in New Zealand were less likely to be on advanced therapies (p < 0.001). In the subset of 780 people (33.8%) who had a recent faecal calprotectin, people with no PPBoD were more likely to have biochemical remission (faecal calprotectin < 100 μg/g). Data were available for endoscopic and radiological remission in 654 people (28.3%); those with no PPBoD were more likely to be in remission (p < 0.001). Over 98% of people with no PPBoD had no days out of role due to disease, whereas those with higher PPBoD had more days out of role (Table 1). Conclusion We present a novel consumer-focused score to evaluate PPBoD in UC. Within this geographically dispersed cohort, the majority had either no or mild PPBoD. Advanced therapies were associated with lower PPBoD, and their health economic value could be evaluated using this tool. Further studies are required to validate this novel score to assess BoD in UC.

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