Abstract

The goal of treatment in ulcerative colitis (UC) is to induce and maintain disease remission. Despite the available treatment options, ongoing challenges remain in managing patients with UC. The current study focused on the patient perspective by exploring how patients perceive their disease severity and treatment experiences and how these evaluations are related to their symptoms and patient-reported outcomes. Data were used from the 2016 UC Patient Study (Kantar Health, New York, NY), a cross-sectional, Internet survey of adult patients who report being diagnosed with UC and currently reside in the US. Measures include demographics, disease and treatment history, and patient-reported outcomes (e.g., Work Productivity and Activity Impairment [WPAI] questionnaire, Inflammatory Bowel Disease Questionnaire). Patients were identified from an Internet panel. The present study focused exclusively on patients who had a history of using an immunomodulator, a biologic, or a combination of 5-ASA and steroids. Statistical differences among groups were examined using chi-square (for symptoms) and one-way ANOVA tests (for WPAI variables). A total of 471 patients were included in this analysis (59.2% were female, mean age=50.6 years [SD=15.0], and 43.9% were currently using an immunomodulator or biologic for maintenance). Self-perceived severity was as follows: 49.0% considered themselves mild, 37.2% moderate, and 13.8% severe. Twenty-three of the 29 patient-reported symptoms varied significantly (p<.05) across levels of severity. Among patients who considered themselves mild, UC-related symptoms were common: diarrhea=44.2%, urgency=42.0%, tenesmus=22.1%, nocturnal bowel movements=20.8%, and rectal bleeding=20.3% (Table 1). Work and activity impairment also varied by level of severity (e.g., overall work impairment=21.8%, 56.7%, and 67.8% for mild, moderate, and severe disease, respectively; p<.05). Similar effects were observed as a function of treatment satisfaction (of which 390 patients had data). Specifically, 18.7% reported being either dissatisfied or neither satisfied nor dissatisfied, 22.1% reported being somewhat satisfied, and 59.2% reported being very/extremely satisfied with their current maintenance treatment. Twenty-three of the 29 patient-reported symptoms varied significantly (p<.05) across levels of satisfaction. Even among patients who were very/extremely satisfied with their treatment, UC-related symptoms were common: diarrhea=53.2%, urgency=48.1%, tenesmus=27.3%, nocturnal bowel movements=24.7%, and rectal bleeding=26.4%. Large proportions of patients perceive their UC disease severity to be mild and are very/extremely satisfied with their current treatment. Yet, even among these patients, many symptoms remain, and considerable impairment in work and daily activities are observed.

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