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

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.

Keywords: inflammatory bowel disease; patient survey; quality of life; ulcerative colitis.

Graphical Abstract

FIGURE 1.

When physicians typically discuss the impact of UC on patients’ mental/emotional health. Because of rounding, the sum of all categories does not equal 100%.

FIGURE 2.

The top 5 aspects that patients wished physicians better understood about the impact of UC on their quality of life. Countries with the highest and lowest proportions of respondents who agreed with each statement are shown. For countries with the highest proportion of respondents, the percentage is shown in black; for countries with the lowest proportion of respondents, the percentage is shown in red.

FIGURE 3.

Patients currently taking prescription medication for their UC (A) and the top 3 indicators for considering changing medication according to (B) patients and (C) physicians. “Cost of medication” was not asked in France. Patients (A) could select all prescription medications they were currently taking for their UC. Patients (B) and physicians (C) could select up to 3 reasons why they would consider changing medication; selected responses shown. *Increased urgency and frequency of stools was ranked 3rd (40%) by Canadian physicians. 5-ASA, 5-aminosalicylates; TNFi, tumor necrosis factor inhibitor.

FIGURE 4.

Patients’ understanding of UC from (A) patients’ perspective and (B) physicians’ perspective. Patient and physician responses are presented in separate images because of the slight difference in the phrasing of questions and to maintain alignment with the surveys.