Physicians Have Higher IBD Remission Standards Than Patients

Marcia Frellick

January 28, 2020

AUSTIN, Texas — For patients with inflammatory bowel disease (IBD), remission often means a resolution of symptoms, but for their physicians, remission is usually judged on test results, according to results from an international survey.

This disconnect "leads to patients living with active disease more often, or relegating themselves to a disabled lifestyle because of it, when, in fact, they could be doing so much better," said David Rubin, MD, from the University of Chicago.

And when patients don't understand remission or set the bar too low for themselves, "it also may lull providers into a sense of complacency," he told Medscape Medical News.

Rubin and his colleagues conducted a survey completed by 2398 patients with IBD and 654 physicians. Almost one-quarter of the patients — 22% — reported that they had never discussed remission with their physicians, but 93% of physicians reported that they typically discuss remission.

Almost half the patients — 45% — defined remission as a resolution of symptoms. In contrast, 64% of physicians relied on test results to confirm remission for patients with Crohn's disease and 70% relied on test results for patients with ulcerative colitis.

Table. Tests That Physicians Reported Using to Confirm Remission
Test Crohn's Disease, % Ulcerative Colitis, %
Colonoscopy 56 58
Biopsy 36 37
Biochemical 8 6

Surveys were completed by physicians and patients in seven countries — the United States, Canada, France, Germany, Italy, Spain, the United Kingdom — and the results did not differ substantially among the countries, Rubin reported here at the Crohn's and Colitis Congress 2020.

"Symptom improvement is necessary for a better quality of life, but it's not sufficient to sustain that improved quality of life," Rubin explained. "To sustain that, you have to address the inflammatory condition."

"About 50% of people who achieve symptom remission are found to still harbor active inflammation. Recognizing this is critically important to achieve our goals," he added.

Symptom improvement is necessary for a better quality of life, but it's not sufficient to sustain that improved quality of life.

Physicians were also asked about remission rates and how satisfied they were with those rates. They reported that remission rates for their patients with IBD ranged from 37% to 55%, depending on the therapy, but a significant proportion also said that they were satisfied with these rates.

For patients with Crohn's disease, 25% of physicians reported high levels of satisfaction with remission rates (at least 6 on a 7-point scale); for patients with ulcerative colitis, 36% of physicians reported high levels of satisfaction.

"We've lowered our expectations in some ways because even our best therapies have low rates of remission," said Rubin. In fact, he pointed out, response, not remission, is the end point used in many clinical trials.

"You can see response rates and think that a therapy is quite good, but what really matters to the patient is remission," he said. "When you ask patients what remission means to them, they say, 'It means I want an unencumbered life. I want to do what's important to me.' For every patient that may be different."

We've lowered our expectations in some ways because even our best therapies have low rates of remission.

The complexity of IBD and the amount of information packed into a visit can stand in the way of remission discussions, said Animesh Jain, MD, assistant professor of gastroenterology and hepatology at University of North Carolina at Chapel Hill, who said he often, but not always, discusses remission with his patients with IBD.

Such discussions are important to reassure patients about their status and to make them aware that their physician has that goal in mind, he told Medscape Medical News.

"Studies like this help to highlight the need for clear and effective tools to help us communicate concepts like remission to patients," he said.

"What I found most surprising was that providers reported high satisfaction with remission rates in IBD," Jain noted. "We know that many patients will not achieve remission, even with our best therapies. So it is surprising that the physicians in this survey reported satisfaction with current remission rates."

And it is a surprise that nearly a quarter of the patients surveyed reported they did not have such discussions, said Neera Gupta, MD, director of research at the Pediatric Inflammatory Bowel Disease Center at Weill Cornell Medicine and New York-Presbyterian in New York City.

This study highlights the need to improve communication with patients, she told Medscape Medical News.

She regularly discusses disease status with her pediatric patients or their families, she explained, noting that there are additional factors in determining status with pediatric IBD.

"In children, we also closely monitor statural growth, a dynamic marker of disease activity in children with IBD. If a child is not growing well, even in the absence of intestinal symptoms, it raises a red flag for us that a child's disease is not in remission," she explained.

I think physicians should up their game so they can help people get where they need to be, or at least have a conversation about it.

The survey showed that 62% of patients with Crohn's disease and 64% of those with ulcerative colitis had never heard of "mucosal healing," which has emerged as a goal in recommendations and in guidelines, including the latest ulcerative colitis guidelines from the American College of Gastroenterology.

"I think physicians should up their game so they can help people get where they need to be, or at least have a conversation about it," Rubin said.

All physicians who responded to the online survey had treated at least 12 patients with IBD in the previous month, and at least 30% of their patients had moderate to severe disease.

Crohn's and Colitis Congress (CCC) 2020: Poster P169. Presented January 23 and 24, 2020.

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