The Communicating Needs and Features of IBD Experiences (CONFIDE) Study: US and European Patient and Health Care Professional Perceptions of the Experience and Impact of Symptoms of Moderate-to-Severe Ulcerative Colitis

Author:

Travis Simon1ORCID,Potts Bleakman Alison2,Dubinsky Marla C3,Schreiber Stefan4,Panaccione Remo5ORCID,Hibi Toshifumi6,Hunter Gibble Theresa2,Kayhan Cem2,Atkinson Christian7ORCID,Sapin Christophe2,Flynn Eoin J2,Rubin David T8

Affiliation:

1. Kennedy Institute and Translational Gastroenterology Unit, University of Oxford , Oxford , United Kingdom

2. Eli Lilly and Company , Indianapolis, IN , USA

3. Susan and Leonard Feinstein IBD Center, Icahn School of Medicine at Mount Sinai , New York, NY , USA

4. Clinic for Internal Medicine I, University Hospital Schleswig-Holstein , Campus Kiel , Germany

5. Inflammatory Bowel Disease Unit, Division of Gastroenterology and Hepatology, University of Calgary , Calgary, AB , Canada

6. Center for Advanced IBD Research and Treatment, Kitasato Institute Hospital, Kitasato University , Tokyo , Japan

7. Adelphi Real World , Bollington , United Kingdom

8. University of Chicago Medicine Inflammatory Bowel Disease Center, University of Chicago Medicine , Chicago, IL , USA

Abstract

Abstract Background The Communicating Needs and Features of IBD Experiences (CONFIDE) study aimed to evaluate the experience and impact of ulcerative colitis (UC) symptoms on patients’ lives and elucidate gaps in communication between patients and health care professionals (HCPs). Methods Online, quantitative, cross-sectional surveys of patients with moderate-to-severe UC and HCPs responsible for making prescribing decisions were conducted in the United States (US) and Europe. UC disease severity was defined by treatment, steroid use, and/or hospitalization history. Results Surveys were completed by 200 US and 556 European patients and 200 US and 503 European HCPs. The most common UC symptoms experienced in the preceding month were diarrhea, bowel urgency, and increased stool frequency. Many patients (45.0% of US patients, 37.0% of European patients) reported wearing diapers/pads/protection at least once a week in the past 3 months due to fear/anticipation of fecal urge incontinence. The top reasons for declining participation in social events, work/school, and sports/exercise were due to bowel urgency and fear of fecal urge incontinence. HCPs ranked diarrhea, blood in stool, and increased stool frequency as the most common symptoms. While over half HCPs ranked bowel urgency as a top symptom affecting patients’ lives, less than a quarter ranked it in the top 3 most impactful on treatment decisions. Conclusions Similar disparities exist between patient and HCP perceptions in the United States and Europe on the experience and impact of UC symptoms. Bowel urgency has a substantial and similar impact on US and European patients, is underappreciated by HCPs, and should be addressed during routine appointments.

Funder

Eli Lilly and Company

Publisher

Oxford University Press (OUP)

Subject

Gastroenterology,Immunology and Allergy

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