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

Explore the Impact of UC Symptoms: Insights from the CONFIDE Study

Discover valuable insights into the impact of ulcerative colitis (UC) 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 UC, shedding light on critical aspects such as:

Patient Demographics and Characteristics: Understand the baseline demographics for the United States (US) and European (EU) patients that participated in the study
Key Symptoms: See data on the prevalence of symptoms, including diarrhea, bowel urgency, and increased stool frequency
Diapers/Pads/Protection Usage: Learn about the use of protective measures by patients due to fear of bowel urgency-related accidents
Impact on Social Activities and Sexual Function: Explore how UC symptoms influence patients’ participation in social events, work, school, sports, and sexual activity
Healthcare Provider - Patient Communication: Discover how healthcare providers (HCPs) view symptoms of moderate-to-severe UC 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

There were 200 patients from the US and 556 European patients that met the eligibility requirements and completed the survey from July to September 2021. The average age of these patients was roughly 40 years (mean age 40.4 and 38.9 for US and European patients) and most participants were male (61.5% and 57.4% for US and EU patients). The most common UC treatments received by both US and European patients included anti-TNF therapies (46.5% and 54.1%) and corticosteroids (40.5% and 62.4%).Both patient groups were similar in that the average time since UC diagnosis was about 8 years (7.9 mean time in both US and European patients).

2. Key findings from the CONFIDE US and EU dataset¹

To assess the burden of UC-related symptoms, patients were asked a series of questions that involved selecting from a list of 30 symptoms. Diarrhea, bowel urgency, and bowel urgency-related accidents were the top 3 most impactful symptoms whereas diarrhea, bowel urgency, and increased stool frequency were the most frequently reported symptoms experienced by patients with moderate-to-severe UC in the US and EU.¹

Most Common and Impactful Symptoms Reported by Patients

Most commonly reported symptoms and symptoms with the greatest impact reported by patients with ulcerative colitis

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3. Use of diapers, pads or other protection in the last three months due to fear/anticipation of bowel urgency-related accident²

Patients with UC were asked if they had to wear a diaper/pad/other protection due to fear or anticipation of fecal urgency incontinence (i.e. bowel urgency-related accident) in the past 3 months. The majority of patients in both the US and Europe reported wearing diaper/pad/protection at least once a month in the past 3 months. This finding was also consistently reported in patients that received advanced therapies.²

Patients were asked if they had previously declined participating in work/school, social events, or sports/physical exercise within the last 3 months. Patients then selected from a list of reasons that included common UC symptoms why they had declined participation. Bowel urgency and fear of bowel urgency-related accidents were among some of the top reasons listed as to why they had declined participating in daily activities. These findings were consistent in both the US and European patients.³

Majority of Patients Surveyed Reported That They Needed to Decline Participation In Daily Activities Because of Their UC-Related Symptoms

Majority of patients with UC reported declining participation in daily activities

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Patients avoiding or decreasing sexual activity due to UC⁴

Patients were asked if within the last 3 months they had avoided or decreased sexual activity because of UC. More than half of the patients with UC surveyed opted to either abstain from or reduce sexual activity.⁴

Patients Avoiding or Decreasing Sexual Activity Due to UC

63% of US patients and 53% of EU patients with UC avoided or decreased sexual activity

Reasons US and EU patients avoided or decreased sexual activity in the last 3 months⁴

Among patients with moderate-to-severe UC who decreased or avoided sexual activity in the last 3 months, fear of bowel urgency was ranked as the top reason. Additional reasons included decreased sexual desire, fear of bowel urgency-related accidents, fear of bowel movement accidents, and fear of fecal seepage.⁴

5. Explore HCP-Perceived UC 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 ulcerative colitis (UC). This study sheds light on critical aspects

Communication Gaps Between HCPs and Patients¹

Over 30% of US patients and 40% of EU patients surveyed reported that they do not feel comfortable discussing bowel urgency with their healthcare provider. The most common reason cited was feeling embarrassed to do so. Other reasons patients ranked included that there was not enough time in the appointment, that they would be wasting the HCP’s time, and that their providers cannot help them. Roughly three-quarters of patients in both the US and Europe said that they would like to discuss this symptom more frequently with their providers. Healthcare providers were asked if they proactively discuss bowel urgency during a routine appointment. The top symptoms proactively discussed by HCPs during routine appointments were blood in stool, diarrhea, and increased stool frequency. Among providers who do not proactively discuss bowel urgency, the top reason cited was that patients should bring this up during the appointment if it is an issue.¹

Reasons patients with UC reported feeling uncomfortable discussing bowel urgency and reasons HCPs did not proactively discuss bowel urgency

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EU=European; HCP=Healthcare Providers; IBD=Inflammatory Bowel Disease; TNF=Tumor Necrosis Factor; UC=Ulcerative Colitis; US=United States

References

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-toSevere Ulcerative Colitis. Inflamm Bowel Dis. 2023; doi: 10.1093/ibd/izad142 (Ahead of print).
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.
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; Vancouver, Canada. Poster P-0678.
Travis S, Potts Bleakman A, Dubinsky M, et al. United States and European patient perspectives on the impact of moderate-tosevere Ulcerative Colitis on sexual activity: Communicating Needs and Features of IBD Experiences (CONFIDE) survey. Poster presented at European Crohns and Colitis Organization - 2023 Congress; 1-4 March 2023; Copenhagen, Denmark. Poster P507.

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Explore the Impact of UC Symptoms: Insights from the CONFIDE Study

1. Patient Demographics and Characteristics¹

2. Key findings from the CONFIDE US and EU dataset¹

3. Use of diapers, pads or other protection in the last three months due to fear/anticipation of bowel urgency-related accident²

Patients avoiding or decreasing sexual activity due to UC⁴

Reasons US and EU patients avoided or decreased sexual activity in the last 3 months⁴

5. Explore HCP-Perceived UC Symptoms and HCP-Patient Communication Gaps: Insights from the CONFIDE Study

Communication Gaps Between HCPs and Patients¹

References

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

Explore the Impact of UC Symptoms: Insights from the CONFIDE Study

1. Patient Demographics and Characteristics1

Expand accordion Visualize Patient Demographic Data

2. Key findings from the CONFIDE US and EU dataset1

3. Use of diapers, pads or other protection in the last three months due to fear/anticipation of bowel urgency-related accident2

4. Impact of UC Symptoms on work/school life, social life, and ability to participate in sports/physical exercise3

Patients avoiding or decreasing sexual activity due to UC4

Reasons US and EU patients avoided or decreased sexual activity in the last 3 months4

5. Explore HCP-Perceived UC Symptoms and HCP-Patient Communication Gaps: Insights from the CONFIDE Study

Expand accordion Most Common HCP Perceived UC Symptoms in the Last Month¹

Expand accordion Top 3 Symptoms Rated by HCPs with Greatest Impact on HCPs’ Treatment Decisions and on Patients with UC¹Top 3 Symptoms Rated by HCPs with Greatest Impact on HCPs’ Treatment Decisions and on Patients with UC¹

Communication Gaps Between HCPs and Patients1

Related Resources

Downloadable PDFs

References

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

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

1. Patient Demographics and Characteristics¹

2. Key findings from the CONFIDE US and EU dataset¹

3. Use of diapers, pads or other protection in the last three months due to fear/anticipation of bowel urgency-related accident²

4. Impact of UC Symptoms on work/school life, social life, and ability to participate in sports/physical exercise³

Patients avoiding or decreasing sexual activity due to UC⁴

Reasons US and EU patients avoided or decreased sexual activity in the last 3 months⁴

Communication Gaps Between HCPs and Patients¹