Patients' perceptions of the impact of ulcerative colitis on social and professional life: results from the UC-LIFE survey of outpatient clinics in Spain

Xavier Calvet,1–3 Federico Argüelles-Arias,4 Antonio López-Sanromán,5 Luis Cea-Calvo,6 Berta Juliá,6 Cristina Romero de Santos,6 Daniel Carpio7 1Hospital de Sabadell. Corporació Sanitària Universitària Parc Taulí, Sabadell, Spain; 2Centro de investigación biomédica en red de enfermedades hepáticas y digestivas (CIBEREHD), Spain; 3Department of Medicine, Universitat Autònoma de Barcelona, Bellaterra, Spain; 4UGC Digestivo Intercentros Hospitales Virgen Macarena-Rocío, Seville, Spain; 5Section of Gastroenterology, Department of Gastroenterology and Hepatology, Hospital Ramón y Cajal, Madrid, Spain; 6Medical Affairs Department, Merck Sharp & Dohme, Madrid, Spain; 7Service of Gastroenterology Complexo Hospitalario Universitario de Pontevedra, Instituto de Investigación Biomedica (IBI), Pontevedra, Spain Purpose: Ulcerative colitis (UC) may cause many patients to miss out on important personal and professional opportunities. We therefore conducted a survey (UC-LIFE) to assess patients’ perceptions of the impact of UC on social and professional lives. Patients and methods: Consecutive unselected UC patients aged ≥18 years were recruited from 38 outpatient clinics in Spain. Patients completed the survey at home, returning it by post. The survey comprised 44 multiple-choice questions, including questions about the impact of UC on social, personal, professional, and academic activities. Results: Of 585 patients invited, 436 (75%) returned the survey (mean age 46 years; 47% women). High proportions of patients considered their disease “sometimes”, “frequently” or “mostly/always” influenced leisure activities (65.1%), recreational or professional activities (57.6%), or relationships with relatives or friends (9.9%). Patients also reported that UC influenced their decision to have children (17.2%), or their ability to take care of children (40.7%); these percentages were higher in women and in younger patients. Overall, 47.0% of patients declared that UC influenced the kind of job they performed, 20.3% had rejected a job due to UC, 14.7% had lost a job due to UC, and 19.4% had had academic problems due to UC. Conclusion: Beyond symptoms alone, UC imposes an enormous additional burden on patients’ social, professional, and family lives. This extra burden clearly needs to be addressed so that the ultimate goal of IBD treatment – normalization of patient quality of life – can be attained by as many patients as possible. Keywords: disease burden, patient-reported outcomes, patients’ perceptions, quality of life, ulcerative coliti