Background: Ulcerative colitis (UC) negatively impacts patients' health-related quality of life (HRQoL).
Aim: The UC-LIFE survey aimed to evaluate the perceived everyday and emotional impact of UC on patients attending outpatient clinics in Spain and explored patient-physician communication.
Methods: Gastroenterologists handed the survey to consecutive unselected UC patients aged ≥18 years. Patients described their perception on the burden of symptoms and disease severity, social and emotional impact of UC on everyday life, disease knowledge and sources of information about the disease, and patient-physician communication.
Results: A total of 585 patients received the survey, and 436 returned it (74.5% response rate; mean age 46 years, 53% men). Most patients perceived that UC prevented them from leading a normal life (79.3%) and impaired sleep quality (76.1%). Most patients described an emotional impact due to UC, mainly feelings of depression and anxiety, and some 38% perceived that UC decreased their self-confidence. Despite most patients believing that their physician listened/asked about UC symptoms, many perceived that emotional/psychological support was lacking.
Conclusions: Findings support the need for a more patient-centered approach to the care of UC patients, to include psychological, emotional, and social aspects. Improved patient-physician communication would be beneficial and may contribute to better HRQoL in UC patients.
Keywords: Disease burden; Emotional; Perception; Psychological; Quality of life; Ulcerative colitis.