Prevalence of bowel urgency and its association with quality of life and disease severity among patients with inflammatory bowel disease: results from the real-world measuring urgency symptoms in inflammatory bowel disease collaboration (MUSIC) online study

Objective Bowel urgency (BU) can place a considerable burden on patients with inflammatory bowel disease (IBD). However, data on its real-world impact on health-related quality of life (HRQoL) are limited. This cross-sectional study assessed the prevalence of BU and its impact on HRQoL in a real-world IBD population.Methods Adults with ulcerative colitis (UC) or Crohn’s disease (CD) were recruited from the IBD Partners cohort, an internet-based cohort of individuals with IBD. BU was assessed using the Urgency Numeric Rating Scale (UNRS). Scores were classified into “no or minimal” BU (UNRS = 0–1) and BU (UNRS = 2–10). Remission was measured via the Simple Clinical Colitis Activity Index or the Short Crohn’s Disease Activity Index. HRQoL was assessed via Patient-Reported Outcomes Measurement Information System (PROMIS) measures, reported via T-scores.Results The study included 2,417 patients (UC: 884; CD: 1533). BU was reported by 44% of patients with UC and 58% with CD. BU rates were higher among patients with active disease than in remission (UC: 77% vs 28%; CD: 87% vs 48%, p < 0.001). Patients experiencing BU reported significantly worse HRQoL than patients without BU across all assessed PROMIS measures, including depression, anxiety, pain interference, sleep disturbance, fatigue, and social satisfaction. BU correlated with disease activity strongly in the UC group (r = 0.62) and moderately in the CD group (r = 0.52).Conclusion In this real-world IBD population, BU significantly affected patients’ HRQoL. BU was associated with disease activity and HRQoL measures. BU assessments should be included in clinical trials and routine clinical practice for UC and CD.