RESUMEN
BACKGROUND: It has been assumed that the symptoms measured in disease activity indices for ulcerative colitis reflect those symptoms that patients find useful in evaluating the severity of a disease flare. OBJECTIVE: We aimed to identify which symptoms are important to patients and to compare these symptoms with a comprehensive list of commonly measured symptoms to evaluate whether the patient-reported important symptoms are represented in current disease activity indices for ulcerative colitis. METHODS: Qualitative focus group study. RESULTS: Patients in this sample confirmed 15 symptoms but not 11 other symptoms found in common ulcerative colitis activity indices. Patients identified an additional 14 symptoms not included in commonly used ulcerative colitis activity indices, which they believed to be important in evaluating the onset or severity of an ulcerative colitis flare. CONCLUSION: Current indices capture only a portion of the clinical symptoms that are important to patients in an ulcerative colitis flare, and may neither accurately measure nor fully reflect patients' experience of ulcerative colitis. These findings present an opportunity to develop better patient-centered measures of ulcerative colitis.