4.5 Article

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

Journal

INFLAMMATORY BOWEL DISEASES
Volume 27, Issue 11, Pages 1747-1755

Publisher

OXFORD UNIV PRESS INC
DOI: 10.1093/ibd/izab016

Keywords

ulcerative colitis; patient survey; quality of life; inflammatory bowel disease

Funding

  1. Pfizer Inc, New York, NY

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The global patient and physician survey on Ulcerative Colitis (UC) revealed that patients experience diagnostic delay, poor disease control, and adverse impact on their quality of life. The majority of patients felt that UC controlled their life rather than them controlling their disease. Emotional and mental health issues were infrequently discussed at routine appointments by physicians, contrasting with patients' perspectives.
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-a minosalicylates 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.

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