CONFIDE Study Reveals Gaps Between Patient and Healthcare Professional Views on UC's Impact on Quality of Life

Ulcerative colitis (UC) follows a relapsing and remitting cycle, with common symptoms such as diarrhea, blood in the stool, bowel urgency, and abdominal pain. For many patients, the unpredictability of symptom onset diminishes quality of life. Current treatment goals are inducing and maintaining symptomatic and endoscopic remission, which can improve quality of life.

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UC is a chronic condition requiring long-term care, monitoring of symptoms, and treatment adherence. Strong communication between patients and healthcare professionals has been shown to improve adherence and patient outcomes.

The Communicating Needs and Features of IBD Experiences (CONFIDE) study surveyed patients with inflammatory bowel disease (IBD) and healthcare professionals managing these conditions in the United States, Japan and five European countries to explore the patient experience and impact of IBD symptoms as well as healthcare professionals’ perceptions of these symptoms in their prescribing decisions.

Simon Travis, M.D., from the Kennedy Institute and Translational Gastroenterology Unit at the University of Oxford in the U.K., and his colleagues published results from patients with moderate-to-severe UC and healthcare professionals in the U.S. and Europe in the June 2024 issue of Inflammatory Bowel Diseases.

The study included adults with at least moderately active disease and healthcare professionals prescribing for and managing patients with UC or Crohn’s disease. A total of 200 U.S. and 556 European patients completed surveys between July 1, 2021, and September 9, 2021. A total of 200 U.S. and 503 European healthcare professionals completed surveys Between May 28, 2021, and October 2, 2021.

Patients and healthcare professionals were sent separate questionnaires. Patients were asked questions regarding symptoms they currently or have ever experienced and to rate these symptoms in terms of greatest impact. Healthcare professionals were asked to rank the most common symptoms reported by patients and which they perceived as having the greatest impact.

The most commonly experienced symptoms were diarrhea, bowel urgency, and increased stool frequency. This response was the same for symptoms experienced during the month before completing the survey and symptoms ever experienced. The top five symptoms with the greatest impact were bowel urgency, diarrhea, bowel urgency-related accidents, increased stool frequency, and persistent abdominal pain.

Most healthcare professionals ranked the three most commonly reported symptoms as diarrhea, blood in the stool and increased stool frequency. Bowel urgency was ranked among the top three most reported symptoms by 24% of U.S. and 29.8% of European healthcare professionals. U.S. and European healthcare professionals ranked the top five symptoms with the greatest impact as follows: blood in the stool, diarrhea, bowel urgency, increased stool frequency, and bowel urgency-related accidents. A total of 76.5% of U.S. and 71% of European healthcare professionals ranked blood in the stool as highly impactful on patients, but only 50% of U.S. and 58% of European patients ranked this symptom as highly impactful.

When asked to rank the top three symptoms that impact their treatment decisions, both U.S. and European healthcare professionals ranked blood in the stool, diarrhea and increased stool frequency as the most impactful. Although about half of the healthcare professionals listed bowel urgency as one of the top five symptoms that impact patients’ lives, only about a quarter of them ranked it as a top three symptom affecting treatment decisions.

More than 30% of U.S. and 40% of European patients reported feeling uncomfortable discussing bowel urgency with their healthcare professionals, citing embarrassment as the most common reason. About 75% of patients who do not discuss this symptom with their prescriber said they would like to do so. The main reason healthcare professionals provided for not discussing bowel urgency was that they expect patients to bring up the subject if it is a concern for them.

Travis and his colleagues concluded that bowel urgency is a substantially impactful symptom for both U.S. and European patients with UC. However, there are discrepancies between healthcare providers' and patients' views on this matter.

They wrote, “There is an urgent need to enhance patient–[healthcare professional] communication and to address bowel urgency in order to improve patient outcomes.”