Eli Lilly finds embarrassment main cause of underreporting of symptoms in ulcerative colitis

A new CONFIDE (Communicating Needs and Features of IBD Experiences) study commissioned by Eli Lilly reveals that even though bowel urgency ranked second as a symptom of moderate to severe active ulcerative colitis (UC), more than 60% of people surveyed didn’t tell their doctors because they were too embarrassed.

Subsequently, only 1 in 4 HCPs named bowel urgency as one of the top three most reported symptoms by their patients. The U.S.-specific results were collated from 200 adults with UC and 200 HCPs and was part of a larger effort which surveyed more than 1,600 adults with UC or Crohn's disease and HCPs in the U.S., Europe and Japan. It was conducted by Adelphi Real World with insight from those working in UC research.

"The first findings from the CONFIDE Study shed light on an important conversation that may not be happening between healthcare providers and people living with ulcerative colitis. Many patients still feel embarrassed or struggle to explain symptoms like bowel urgency, a common experience that can take a toll on a person's day-to-day life," said Melodie Narain-Blackwell, founder of Color of Crohn's and Chronic Illness, in a release.

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The goal of the project is to examine and understand the roadblocks many people with inflammatory bowel disease (IBD) face when it comes to communicating symptoms of their diseases which may be embarrassing to them and lead to the omission of important symptoms being shared with their HCPs.

"One of the most important aspects of accurate diagnosis and treatment is to ensure that patients feel completely comfortable talking about their symptoms with their provider," said Cem Kayhan, M.D., gastroenterology indications medical leader at Lilly.

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Lilly reported the study’s results at the Advances in Inflammatory Bowel Diseases conference which was held both virtually and in Orlando, Florida, early this month. The company will continue to present results from the study throughout 2022.

This survey comes as the Big Pharma is gearing up for a potential FDA approval in UC for its experimental drug mirikizumab, with plans to submit the drug to the FDA next year.