Abstract
Abstract Background The prevalence and burden of inflammatory bowel diseases (IBD) including Crohn’s disease (CD) are rising globally. We present a novel score to evaluate the patient-perceived burden of disease (PPBoD) in CD, and explored it in a large real-world Australasian cohort. Methods The Crohn’s Colitis Care (CCCare) Clinical Registry was interrogated in October 2023. Adults with CD across 17 IBD centres with an outpatient encounter in the last 14 months were included. A novel PPBoD score was designed for CD, which included patient-reported components from the Harvey-Bradshaw index (abdominal pain and patient-rated general wellbeing) as well as nocturnal bowel actions, defecation urgency and stool frequency. The PPBoD score was calculated as detailed in figure 1. A total score of 0 was defined as no PPBoD, 1-2 as mild, 3-4 as moderate and ≥ 5 as significant PPBoD. Correlations amongst PPBoD and demographics, disease and treatment factors were explored. Results A total of 3461 people with CD were assessed in the last 14 months and 3233 (93.4%) had adequate data to calculate PPBoD. Of these, 80.0% had either no or mild PPBoD (table 1). While gender varied significantly between PPBoD categories, age and BMI did not. People with lower PPBoD were more likely to be receiving advanced therapies and had lower rates of steroid use than those with higher PPBoD. There were no significant differences in the use of immunomodulators and/or aminosalicylates across PPBoD categories. The cohort was geographically dispersed across Australia (n = 2414, 74.7%) and New Zealand (n = 819, 25.3%). There was significantly higher PPBoD in New Zealand compared to Australia but notably people in New Zealand were less likely to be receiving advanced therapies (p < 0.001). In the subset of 1074 people (33.2%) with a recent faecal calprotectin, those with no PPBoD were more likely to have biochemical remission (faecal calprotectin < 100 μg/g). Data were available to assess endoscopic and radiological remission in 1049 people (32.4%); those with no PPBoD were more likely to be in remission. Less than 1% of people with no PPBoD had any days out of role due to CD, whereas those with higher PPBoD had more days out of role (Table 1). Conclusion We present a novel consumer-focused score to quantify PPBoD in CD. Within this geographically dispersed cohort, the majority had either no or mild PPBoD. Advanced therapy use appeared to be protective against high PPBoD. Further studies are required to validate this novel score to assess PPBoD in CD.
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