Skip To Main Content
Lilly
Menu closed
Lilly
  • Account Login / Register
  • Medical Home
  • Medical Education
      • All Therapeutic Areas
        • Alopecia Areata
        • Atopic Dermatitis
        • Dermatology
        • Psoriasis
        • Diabetes
        • Hypoglycemia
        • Inflammatory Bowel Disease
        • Crohn's Disease
        • Ulcerative Colitis
        • Migraine
        • Alzheimer's Disease
        • Cognitive Health
        • Obesity
        • Obstructive Sleep Apnea
        • Breast Cancer - Early
        • Breast Cancer - Metastatic
        • Hematological Malignancy
        • Non-Small Cell Lung Cancer
        • Oncology Precision Medicine
        • Thyroid Cancer
        • Axial Spondyloarthritis
        • Psoriatic Arthritis
        • Resources
      • All Therapeutic Areas
        • Alopecia Areata
        • Atopic Dermatitis
        • Psoriasis
        • Diabetes
        • Hypoglycemia
        • Inflammatory Bowel Disease
        • Cluster Headache
        • Migraine
        • Alzheimer's Disease
        • Cognitive Health
        • Obesity
        • Obstructive Sleep Apnea
        • Breast Cancer - Metastatic
        • Gastrointestinal Cancer
        • Hematological Malignancy
        • Oncology
        • Osteoporosis
        • Rheumatoid Arthritis
        • Resources
  • Independent Medical Education
    • Cardiovascular
      • Alopecia Areata
      • Atopic Dermatitis
      • Psoriasis
      • Diabetes
      • Crohn's Disease
      • Ulcerative Colitis
      • Migraine
      • Alzheimer's Disease
      • Obesity
      • Obstructive Sleep Apnea
      • Breast Cancer
      • Gastrointestinal Cancer
      • Hematological Malignancy
      • Non-Small Cell Lung Cancer
      • Oncology
      • Oncology Precision Medicine
      • Prostate Cancer
      • Axial Spondyloarthritis
      • Psoriatic Arthritis
  • Chat Contact Us
Lilly

You are now leaving the Lilly Medical Education website

The link you clicked on will take you to a site maintained by a third party, which is solely responsible for its content. Lilly USA, LLC does not control, influence, or endorse this site, and the opinions, claims, or comments expressed on this site should not be attributed to Lilly USA, LLC. Lilly USA, LLC is not responsible for the privacy policy of any third-party websites. We encourage you to read the privacy policy of every website you visit.
Click "Continue" to proceed or "Return" to return to Lilly Medical Education.

The Communicating Needs and Features of IBD Experiences (CONFIDE) Study

Loading icon

Methods

Crohn’s Disease

Ulcerative Colitis

Explore the Impact of Crohn’s Disease Symptoms: Insights from the CONFIDE Study

Discover valuable insights into the impact of Crohn’s disease (CD) symptoms on patients’ lives through the Communicating Needs and Features of IBD Experiences (CONFIDE) Study. This research initiative delves into the experiences of patients with moderate-to-severe CD, shedding light on critical aspects such as:

  1. Patient Demographics and Characteristics: See the baseline demographics for the United States (US) and European (EU) patients that participated in the study
  2. Key Symptoms: Learn about prevalent CD symptoms, including diarrhea, bowel urgency, and increased stool frequency
  3. Diapers/Pads/Protection Usage: Understand how patients with CD manage their symptoms by using protective measures due to fear of bowel urgency–related accidents
  4. Impact on Social Activities and Sexual Function: Explore how CD symptoms influence patients’ participation in social events, work, school, sports, and sexual activity
  5. Healthcare Provider - Patient Communication: Discover how healthcare providers (HCPs) view symptoms of moderate-to-severe CD and explore communication gaps between HCPs and patients

By bridging the gap between patient experiences and healthcare professionals, the CONFIDE Study aims to enhance patient care and communication.

1. Patient Demographics and Characteristics1,2

Eligible patients who completed the survey from July to September 2021 included 215 patients from the US and 547 from EU.1 The average age was 41 years for US and 38 years for EU patients, and majority of participants were male (55% for US and EU patients). More than half of the patients from the US (58.1%) and EU (63.4%) were receiving advanced therapies. Other common CD treatments received by both US and European patients included corticosteroids (59% and 50%), immunomodulators (39% and 47%), and 5-ASA (24% and 31%). Both patient groups were similar in that the average time since CD diagnosis was approximately 9 years (8.7 years in US and 9.2 years in European patients).2

Demographic data of US and EU patients with moderate-to-severe CD from CONFIDE.
chevron-filled-down View description

2. Key Findings From the CONFIDE US and EU Dataset2

To assess the burden of CD–related symptoms, patients were asked a series of questions that involved selecting from a list of 30 symptoms.3 Diarrhea, bowel urgency, and increased stool frequency were the top 3 most impactful as well as most frequently reported symptoms experienced by patients with moderate-to-severe CD in the US and EU.2


Most Common and Impactful Symptoms Reported by Patients
Bar graph of most common and most impactful symptoms reported by patients with CD.
chevron-filled-down View description

3. Use of diapers, pads or other protection in the last 3 months due to fear/anticipation of bowel urgency-related accidents4

Patients with CD were asked if they had to wear a diaper/pad/other protection due to fear or anticipation of bowel urgency-related accidents in the past 3 months. A large proportion of the patients surveyed (66% in the US and 60% in EU), including those receiving advanced treatments (68% in the US, 67% in EU), disclosed that they had used diapers, pads, or protection at least once a month for the last 3 months due to fear of bowel urgency-related accidents.4


Frequency of symptoms/impact in the past 3 months in patients with CD
Frequency of diapers, pads or other protection use in patients with CD
chevron-filled-down View description
Frequency of symptoms/impact among patients receiving advanced therapiesa in the past 3 months in patients with CD
Frequency of diapers, pads or other protection use in patients with CD receiving advanced therapies. Frequency of diapers, pads or other protection use in patients with CD receiving advanced therapies.
chevron-filled-down View description

4. Impact of CD Symptoms on work/school life, social life, and ability to participate in sports/physical exercise5

Majority of patients with CD in both the US and EU reported that they declined participation in daily life activities within the last 3 months because of their CD-related symptoms. Bowel urgency and fear of bowel urgency-related accidents were among the top most common CD related reasons for declining participation in social events, sports/physical exercise, and work/school in both US and EU patients.5


Majority of Patients Surveyed Reported That They Needed to Decline Participation In Daily Activities Because of Their CD-Related Symptoms
Majority of patients with CD reported declining participation in daily activities
chevron-filled-down View description

Patients avoiding or decreasing sexual activity due to CD6

Patients were asked if within the last 3 months they had avoided or decreased sexual activity because of CD. More than half of patients with CD opted to either abstain from or reduce sexual activity in the past 3 months.6


Patients Avoiding or Decreasing Sexual Activity Due to CD

69% of US patients and 56% of EU patients with CD avoided or decreased sexual activity

Reasons US and EU patients avoided or decreased sexual activity in the last 3 months6

Among patients with CD who decreased or avoided sexual activity in the last 3 months, fear of bowel urgency-related accidents was cited as the top reason. Additional reasons included fear of fecal seepage, tiredness/fatigue, fear of bowel movement accidents, and decreased sexual desire.


5. Explore HCP-Perceived Crohn’s Disease Symptoms and HCP-Patient Communication Gaps: Insights from the CONFIDE Study

The Communicating Needs and Features of IBD Experiences (CONFIDE) Study provides valuable insights into how healthcare professionals (HCPs) perceive symptoms related to moderate-to-severe Crohn’s disease (CD). This study sheds light on critical aspects.

Surveyed HCPs were asked to rank the top CD symptoms most reported by their patients. Diarrhea, blood in stool,and increased stool frequency were the top 3 HCP-perceived symptoms. Bowel urgency was not perceived by HCPs as one of the 3 most common symptoms reported by patients despite being ranked second among patients with CD.2

HCP-perceived most common CD symptoms reported by patients HCP-perceived most common CD symptoms reported by patients
chevron-filled-down View description

Diarrhea, blood in stool, and increased stool frequency were the top 3 symptoms rated as having the greatest impact on HCP treatment decisions as well as the top HCP-perceived symptoms with greatest impact on patients. Bowel urgency was identified as one of the top 3 most impactful symptoms in patients with CD, however, most HCPs did not prioritize bowel urgency as one of the top 3 symptoms with greatest impact on patients or treatment decisions.

Top symptoms with greatest impact on HCPs’ treatment decisions and HCP perceived greatest impact on patients with moderate-tosevere CD.
chevron-filled-down View description

Communication Gaps Between HCPs and Patients1

Embarrassment was the most common reason for patients’ discomfort in discussing bowel urgency and bowel urgency-related accidents with HCPs, while HCPs reported not proactively discussing these symptoms as they expect patients to bring it up; this highlights a communication gap.
Reasons patients with CD reported feeling uncomfortable discussing bowel urgency and reasons HCPs did not proactively discuss bowel urgency. Reasons patients with CD reported feeling uncomfortable discussing bowel urgency and reasons HCPs did not proactively discuss bowel urgency.
chevron-filled-down View description

Related Resources

Downloadable PDFs

Download PDF Medical Answer PDF Document Created with Sketch. Communicating Needs and Features of Inflammatory Bowel Disease Experiences Study (CONFIDE) Study: Key Results for US Patients with Crohn's Disease

This infographic summarizes key results of the CONFIDE study for patients with moderately-to-severely active Crohn’s disease in the United States.

CD=Crohn's Disease; EU=European; HCP=Healthcare Providers; IBD=Inflammatory Bowel Disease; US=United States.

References

  1. Schreiber S, Gibble TH, Dubinsky MC. Communication Gap between Patients and Health Care Professionals on Bowel Urgency with Focus on Crohns Disease: Results from the Communicating Needs and Features of IBD Experiences (CONFIDE) Survey. Poster presented at the United European Gastroenterology Week - 31st Annual Conference; 14 17 October 2023; Copenhagen, Denmark. Poster PP0880.
  2. Dubinsky M, Gibble TH, Travis S, et al. Communicating Needs and Features of IBD Experiences (CONFIDE) Survey: Impact of Moderate-to-Severe Crohn’s Disease Symptoms on Health Care Professional Treatment Decisions in the United States and Europe. Poster presented at AIBD; 14 16 December 2023; Orlando, Florida. Poster 25
  3. Travis S, Potts Bleakman A, Dubinsky MC, et al. 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. Inflamm Bowel Dis. 2023; doi: 10.1093/ibd/izad142 (Ahead of print).
  4. Schreiber S, Gibble TH, Dubinsky MC, et al. S855 Communicating Needs and Features of IBD Experiences (CONFIDE) Survey: Burden and Impact of Bowel Urgency is Similar in Patients With Moderate-to-Severe Crohn’s Disease and Ulcerative Colitis. Am J Gastroenterol. 2023;118(10S): S633-S634.
  5. Schreiber S, Gibble TH, Dubinsky MC, et al. Communicating Needs and Features of IBD Experiences (CONFIDE) Survey: Burden and Impact of Bowel Urgency is Similar in Patients with Moderate-to-Severe Crohn’s Disease and Ulcerative Colitis. Poster presented at American College of Gastroenterology; 20 25 October 2023; Pancouver, Canada. Poster P-0678.
  6. Rubin D, Gibble TH, Travis S, et al. Communicating Needs and Features of IBD Experiences (CONFIDE) Survey: United States and European Patient Perspectives on the Impact of Moderate-to-Severe Crohns Disease on Sexual Activity. Poster presented at Advances in Inflammatory Bowel Diseases; 14 16 December 2023; Orlando, Florida. Poster 03.

VV-MED-134811

Please rate your satisfaction with the content on the following statements:

Very Dissatisfied

Dissatisfied

Neutral

Satisfied

Very Satisfied

Credibility of information
Credibility of information
Relevance of the information to my needs
Relevance of the information to my needs
Confidence to implement the learnings in my clinical practice
Confidence to implement the learnings in my clinical practice

Please rate your satisfaction with the content on the following statements:

Credibility of information
Credibility of information
Very Satisfied
Very Dissatisfied
Relevance of the information to my needs
Relevance of the information to my needs
Very Satisfied
Very Dissatisfied
Confidence to implement the learnings in my clinical practice
Confidence to implement the learnings in my clinical practice
Very Satisfied
Very Dissatisfied
  • Copyright
  • Terms of Use
  • Privacy Statement
  • Consumer Health Privacy Notice
  • Accessibility Statement
  • Sitemap

To speak to customer support:
Call (XXX) XXX-XXXX

This site is intended for US Healthcare Professionals only.

4.4.53 05/2025 | GLOOTH00001 04/2015 | © Lilly USA, LLC 2025. All rights reserved.

Product names listed above are trademarks or registered trademarks owned by or licensed to Eli Lilly and Company, its subsidiaries, or affiliates

California Consumer Privacy Act (CCPA) Opt-Out Icon Your Privacy Choices
Cookie Settings
Facebook X LinkedIn
Lilly