Two-thirds of ulcerative colitis patients believe the disease affects their personal relationships and half think it impacts their ability to obtain an education or their career, a U.S. survey shows.
The UC Narrative Survey, conducted in the fall of 2017, covered 301 patients and 149 gastrointestinal specialists.
Patients said they struggle with intimacy, mental health and perceptions of personal failure. They also said that improving patient-physician communication could help them manage their disease better.
Sixty-four percent said the disease controlled their lives, with 63 percent saying they were spending an inordinate amount of time in the bathroom.
Although two-thirds said they believed their disease to be under control, 39 percent in this category noted that they averaged nine or more trips to the bathroom on their worst day.
Sixty-nine percent thought they would be more successful if they didn’t have the disease. And 28 percent said it figured into decisions on whether to adopt a child.
Meanwhile, 66 percent of doctors said they believe that more than half their patients accept frequent trips to the bathroom as part of living with the condition. And 53 percent said they think more than half accept cramping and pain as part of the disorder.
Sixty-five percent of patients said they felt the disease affected their personal relationships and 50 percent believed it had an impact on their ability to obtain an education or pursue their career.
Half of the patients surveyed said they weren’t comfortable discussing some topics with their gastroenterologists. Thirty-four percent said they wouldn’t want to discuss their mental health, 46 percent would be uncomfortable discussing their emotional concerns, and 46 percent their sex life.
The findings could open the door to better patient-doctor communication on these issues, those who conducted the survey said.
Both patient and doctor responses suggested that patients could be making better use of advocacy groups’ resources. Only 55 percent of patients reported using patient association resources, or having doctors refer them to one or more of the organizations.
In addition, only 45 percent of gastrointestinal specialists said they had referred patients to an association for information or support. But 40 percent said it might be helpful to have information from patient associations to give to their patients.
“These survey results highlight the unfortunate reality that some patients accept their symptoms as their way of life” with ulcerative colitis, Michael Osso, president and chief executive officer of the Crohn’s & Colitis Foundation, said in a press release. “This underscores the need for patients and gastroenterologists to more effectively communicate about all aspects of the disease.”
The survey is part of the UC Narrative Program, Pfizer’s global initiative to help the ulcerative colitis community learn more about how the disease affects patients. A group called the Global UC Narrative Advisory Panel helped develop the survey. The Crohn’s & Colitis Foundation helped recruit respondents for the survey and made space available for presenting its preliminary findings during the Crohn’s & Colitis Congress in Las Vegas on Jan. 18, 2018.
The next steps involve combining the preliminary findings of the U.S. survey with those from surveys in nine other countries to generate a better picture of living with ulcerative colitis on a global scale.
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