Patient and Health Care Professional Perceptions of the Experience and Impact of Symptoms of Moderate-to-Severe Crohn's Disease in US and Europe: Results from the Cross-Sectional CONFIDE Study

Dig Dis Sci. 2024 Jul;69(7):2333-2344. doi: 10.1007/s10620-024-08434-5. Epub 2024 May 3.

Abstract

Background: Crohn's disease (CD) significantly affects patients' health-related quality of life and well-being.

Aims: Communicating Needs and Features of IBD Experiences (CONFIDE) survey explores the experience and impact of moderate-to-severe CD symptoms on patients' lives and identifies communication gaps between patients and health care professionals (HCPs).

Methods: Online, quantitative, cross-sectional surveys of patients, and HCPs were conducted in the United States (US), Europe (France, Germany, Italy, Spain, United Kingdom), and Japan. Criteria based on previous treatment, steroid use, and/or hospitalization defined moderate-to-severe CD. US and Europe data are presented as descriptive statistics.

Results: Surveys were completed by 215 US and 547 European patients and 200 US and 503 European HCPs. In both patient groups, top three symptoms currently (past month) experienced were diarrhea, bowel urgency, and increased stool frequency, with more than one-third patients wearing diaper/pad/protection at least once a week in past 3 months due to fear of bowel urgency-related accidents. HCPs ranked diarrhea, blood in stool, and increased stool frequency as the most common symptoms. Although 34.0% US and 27.2% European HCPs ranked bowel urgency among the top five symptoms affecting patient lives, only 12.0% US and 10.9% European HCPs ranked it among top three most impactful symptoms on treatment decisions.

Conclusion: Bowel urgency is common and impactful among patients with CD in the US and Europe. Differences in patient and HCP perceptions of experiences and impacts of bowel urgency exist, with HCPs underestimating its burden. Proactive communication between HCPs and patients in clinical settings is crucial for improving health outcomes in patients with CD.

Keywords: Bowel urgency; Crohn’s disease; Health-related quality of life; Patient experience.

MeSH terms

  • Adult
  • Attitude of Health Personnel
  • Crohn Disease* / epidemiology
  • Crohn Disease* / psychology
  • Crohn Disease* / therapy
  • Cross-Sectional Studies
  • Europe / epidemiology
  • Female
  • Health Personnel / psychology
  • Humans
  • Male
  • Middle Aged
  • Perception
  • Quality of Life
  • Severity of Illness Index
  • Surveys and Questionnaires
  • United States / epidemiology
  • Young Adult