DOP105 Patient-reported quality of life in moderate-to-severe Crohn’s Disease and Ulcerative Colitis: Insights from the communicating needs and features of IBD experiences (CONFIDE) survey
Authors: Schreiber S W , Hibi T , Bleakman A P , Travis S , Panaccione R , Dubinsky M C , Gibble T H , Kayhan C , Panni T , Favia A D , Flynn E J , Atkinson C , Rubin D T 
Published: January 2025

Background

Improving health-related quality of life (HRQoL) is a long-term treatment goal for Crohn’s disease (CD) and Ulcerative colitis (UC).1 The CONFIDE study explored patients’ perspectives on the experiences and impact of CD and UC-related symptoms in the US, Europe (France, Germany, Italy, Spain, and UK), and Japan. Here, we assessed HRQoL among patients with CD or UC using the Short Inflammatory Bowel Disease Questionnaire (SIBDQ).

Methods

Online, quantitative, cross-sectional surveys were conducted among patients with moderate-to-severe CD or UC, defined by criteria based on previous treatment, steroid use, and/or hospitalisation. SIBDQ is a 10-item self-reported questionnaire assessing HRQoL within the past 2 weeks across bowel and systemic symptoms and emotional and social function.2,3 Each item is scored on a 7-point Likert scale (1=severe problem to 7=no problem); higher scores indicate better HRQoL.4 Patients were asked ‘How severe do you think your CD or UC is currently?’ and rated disease severity as mild/moderate/severe/don’t know. Descriptive statistics were used to summarise data.

Results

The analysis included 547 European (males [M]=55%, mean age=38 years [yrs]), 215 US (M=55%, 41 yrs), and 99 Japanese (M=68%, 43 yrs) patients with CD and 556 European (M=57%, 39 yrs), 200 US (M=62%, 40 yrs),and 124 Japanese (M=70%, 49 yrs) patients with UC. Of these, 347 (63%) European, 125 (58%) US, and 86 (87%) Japanese patients with CD, and 301 (54%) European, 153 (77%) US, and 52 (42%) Japanese patients with UC were receiving advanced therapies at data collection.

Mean SIBDQ total scores were 4.1, 4.0, and 5.1 for European, US, and Japanese patients with CD, and 4.1, 3.9, and 5.6 for those with UC. Scores were similar across all SIBDQ domains and among patients receiving advanced therapies. Japanese patients reported numerically higher mean (SD) SIBDQ total and domain scores than European and US patients (Figure 1).

In Europe and the US, patients who perceived their CD and UC as moderate or severe had numerically lower mean SIBDQ scores than those with mild disease perceptions. Japanese patients reported numerically higher mean SIBDQ scores than European and US patients, regardless of perceived disease severity (Figure 2).

Conclusion

Despite receiving advanced therapies, patients with CD or UC reported impaired HRQoL as measured by the SIBDQ, with Japanese patients reporting better HRQoL than European and US patients. This may stem from differences in characteristics of survey respondents, environment (e.g., bathroom access) and healthcare. Mean SIBDQ scores suggest that patients who perceive their CD or UC to be more severe report worse HRQoL.

References

1. Al Khoury A, Balram B, Bessissow T, et al. Dig Dis Sci. 2022;67(6):1956-1974.

2. Irvine EJ, Zhou Q, Thompson AK. Am J Gastroenterol. 1996;91(8):1571-1578.

3. Yarlas A, D'Haens G, Willian MK, Teynor M. Inflamm Bowel Dis. 2018;24(2):450-463.

4. Roseira J, Sousa HT, Marreiros A, Contente LF, Magro F. Health Qual Life Outcomes. 2021;19(1):59.