LAS VEGAS — In this exclusive video from the Crohn’s & Colitis Congress, David T. Rubin, MD, professor of medicine at University of Chicago Medicine, discusses the U.S. results of the UC Narrative survey, a global initiative led by Pfizer to seek information from patients with ulcerative colitis and gastroenterologists about the real impacts of living with the disease.
These initial findings from the U.S. survey were released in conjunction with the inaugural Crohn’s & Colitis Congress.
“These findings were very important because they tell us a little bit more about how people with ulcerative colitis are affected by the disease,” Rubin said. “What we learned ... is that living with ulcerative colitis has a significant impact in terms of fatigue, emotional well-being, and in fact it has actually resulted in many of these patients describing that the disease is controlling their life.”
Developed in collaboration with the Crohn’s & Colitis Foundation, the UC Narrative survey was completed online or by phone by 301 patients with UC living in the U.S last year. Additionally, 149 U.S. gastroenterologists also completed the survey online. All participants were compensated, according to a press release.
Key findings included:
- 64% of patients reported they felt their disease controls their life;
- 63% said they spend more time in the bathroom than anywhere else;
- 69% felt they would be a “more successful person” if they did not have UC;
- 28% said that they have changed their plans about having children;
- 66% considered their UC to be “controlled with few to no symptoms,” and among them 39% averaged at least nine trips to the bathroom on their worst day, 80% averaged up to four trips on their best day, and 30% reported three or more flares in the past year;
- 66% of the gastroenterologists said more than half of their patients have accepted urgency as part of life, 53% said more than half have accepted pain and cramping; 65% said their patients would approach their personal relationships differently if they did not have UC, and 50% said their patients would approach their career or education differently if they did not have UC;
- 34% of patients wished their gastroenterologist better understood how UC affects their mental health;
- more than 46% of patients said they don’t feel comfortable talking about emotional concerns with their gastroenterologist;
- 46% of patients said it was important to them for UC to have less impact on their sex lives and personal relationships, yet 50% said they don’t feel comfortable talking to their gastroenterologist about these topics;
- 55% of patients said they had ever reached out, been referred to, or relied on information from a patient association; and
- 40% of gastroenterologists said having informed resources to provide to their patients would help them improve their relationships with patients; yet 45% said they recommended patient associations as a source for information and support to less than half of their patients.
“One of the challenges that both groups identified is having enough time, and learning how to address some of these barriers,” Rubin said. “What we highlighted at this meeting was the way that we can all be working together ... to address how these patients are living with these problems.”
The U.S. results will be combined those from nine other countries in a final global report, according to the press release. – by Adam Leitenberger
UC Narrative. Pfizer. Accessed January 22, 2018. https://www.pfizer.com/news/press-kits/uc-narrative.
Disclosures: Rubin reports financial relationships with Pfizer, AbbVie, ACG, Celgene, Cornerstones Health, Forward Parma, Genentech, GoDuRn, Janssen, Lockwood Group, Miraca Life Sciences, Prometheus Laboratories, Roche, Samsung Bioepis, Sandoz Pharmaceuticals, Shire, Takeda and UCB Pharma.