BACKGROUND: Urgency, the immediate need to defecate, is common in ulcerative colitis (UC). The frequently used patient reported outcome (PRO)-2 for UC includes only rectal bleeding and stool frequency. We sought to investigate the association of urgency in UC patients with 1) quality of life (QoL) domains and 2) future UC hospitalizations, steroid prescriptions, and colectomy. METHODS: We conducted a cross-sectional and then a subsequent longitudinal study within IBD Partners, a patient-powered research network. We described associations of levels of urgency in UC patients with PROMIS QoL domains (depression, anxiety, social satisfaction, fatigue, sleep, and pain). Next, a longitudinal cohort determined associations between baseline urgency and subsequent clinical outcomes including UC hospitalization, steroid prescription, or colectomy within 12 months. We used bivariate statistics and logistic regression models to describe independent associations. RESULTS: A total of 632 UC patients were included in the cross-sectional study. After adjusting for clinical variables, rectal bleeding, and stool frequency, “hurry”, “immediately” and “incontinence” increased the odds of social impairment by 2.05 [1.24-3.4] (p = 0.005), 2.76 [1.1-6.74] (p = 0.028), and 7.7 [1.66-38.3] (p = 0.009) respectively compared to “no hurry”. Urgency also significantly increased the odds of depression, anxiety, and fatigue. In the multivariate pooled logistic regression of the longitudinal cohort, Urgency was associated with a significant stepwise increase in risk of hospitalizations, steroids, and colectomy. “Hurry”, “immediately” and “incontinence” increased the odds of colectomy within 12 months by 1.41 [1.15-1.72] (p < 0001), and 3.29 [2.13-5.09] (p < 0001). CONCLUSION: We demonstrate that urgency is a PRO independently associated with compromised QoL in patients with UC. Urgency is associated with future risk of hospitalizations, steroid prescription, and colectomy. Our findings support the consideration of urgency as a UC-specific PRO and its use as an outcome in clinical trials to capture QoL and risk of clinical decompensation.
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