Journal Article

Ulcerative Colitis Narrative Global Survey Findings: The Impact of Living With Ulcerative Colitis—Patients’ and Physicians’ View

Deuring, J Jasper, Steinberg, Kathy, Rubin, Michele, Connor, Susan, Dubinsky, Marla C, Molander, Pauliina, Watanabe, Kenji, Melmed, Gil Y, Woolcott, John, Cappelleri, Joseph C, Peyrin-Biroulet, Laurent

2021

Overview

Abstract Background The Ulcerative Colitis (UC) Narrative is a global patient and physician survey aimed at identifying the impact of UC and comparing and contrasting perceptions of UC burden and management approaches. Methods Surveys of patients with UC (self-reported diagnosis; n = 2100) and physicians (n = 1254) were completed across 10 countries by The Harris Poll between August 2017 and February 2018. Questionnaires covered multiple aspects of UC, including diagnosis, treatment, and impact on patient quality of life, in addition to standard demographic information. Descriptive statistics are reported. Results The majority of patients (82%) had moderate to severe UC (based on medication history; those who had only ever taken 5-aminosalicylates were excluded); 67% described their UC as controlled with few to no symptoms. On average, patients experienced 4.3 flares (standard deviation, 7.4) in the past year. Diagnostic delay was on average 2.0 years (standard deviation, 5.4); 42% of patients waited ≥1 year. Most patients (65%) felt that UC controlled their life rather than them controlling their disease. Because of the fear of repercussions, many patients had not disclosed their UC to their employer. Discussion of the emotional impact of UC during routine appointments was less of a priority for physicians, compared with patients. Conclusions The data from this global survey highlight that patients with UC experience diagnostic delay, poor disease control, and adverse impact on their quality of life. Patients report UC to be a mentally exhausting condition; however, emotional and mental health issues are infrequently discussed at routine appointments. Graphical Abstract Graphical Abstract

• Publisher: Oxford University Press,Lippincott, Williams & Wilkins
• Subject: Clinical Research / Colitis, Ulcerative / Colitis, Ulcerative - diagnosis / Colitis, Ulcerative - therapy / Delayed Diagnosis / Humans / Inflammatory bowel disease / Life Sciences / Mental Health / Patients / Physician-Patient Relations / Physicians / Quality of Life / Surveys and Questionnaires