Perception of disease burden and treatment satisfaction in patients with ulcerative colitis from outpatient clinics in Spain: UC-LIFE survey

Objectives Ulcerative colitis (UC) conditions patients’ everyday life. With this survey, we aimed to assess the perceived disease burden, preferred treatment attributes, and treatment satisfaction reported by Spanish UC patients. Methods Consecutive unselected UC patients aged at least 18 years were recruited from outpatient hospital clinics. Patients completed the survey at home, returning it by postmail. With test-like questions, they described UC behavior, preferences, and satisfaction with treatment. Results Of 585 patients invited, 436 (75%) returned the survey (mean age 46 years, 53% men). Of these, 47.1% described their disease during the past year as ‘controlled or nearly controlled’, 28.0% as ‘symptoms not impairing everyday life,’ and 24.9% ‘disruptive symptoms’. Only 8.7% reported the complete absence of symptoms during the previous year, and 18.8, 30.7, and 47.4%, respectively, described at least one hospital admission, emergency room visit, or nonscheduled visit because of UC activity. Urgency of defecation was the most disruptive symptom. The most important therapy attribute was continuous control of symptoms (44.6%). Most patients (78.8%) were ‘very satisfied’ or ‘satisfied’ with current treatment, even those reporting a high burden of symptoms. Conclusion Half of the patients considered their UC as ‘controlled or nearly controlled’ and the degree of satisfaction with their therapies was high. However, they reported a high burden of symptoms and resource consumption during the previous year. These findings indicate that patients may get used to living with symptoms, underestimating the potential of therapy for achieving a complete remission. Urgency of defecation was mentioned as highly disrupting and should probably be included in scores and patient-reported outcomes.