Ulcerative Colitis Patients Feel Much Worse Than Their Doctors Think

Ulcerative colitis has a greater impact on patients’ quality of life than physicians perceive, and the disease affects their lives even more than the impact of other chronic conditions, such as migraine, asthma, and rheumatoid arthritis.

Two Internet surveys reveal that ulcerative colitis causes major disruptions in daily activities and a substantial psychological burden, including fears of cancer and disease progression.

The Ulcerative Colitis: New Observations on Remission Management And Lifestyle (UC:NORMAL) study aimed to understand physicians’ perceptions of ulcerative colitis as well as the viewpoints of patients with other chronic diseases. From panels of approximately 900,000 adults used for research surveys, 451 patients identified themselves as having predominantly mild to moderate ulcerative colitis. Another 919 patients with other chronic diseases were recruited, about 300 each for rheumatoid arthritis, asthma, and migraine. In addition, the survey included 300 gastroenterologists (not associated with these patients).

A separate Crohn's and Colitis Foundation of America (CCFA) survey invited a random sample of 49,410 members of the CCFA to participate, of whom 4400 members responded. From these, 1595 people with ulcerative colitis joined the survey

In both surveys, ulcerative colitis patients said they feel high levels of anxiety and stress about their disease. Their main fears were developing cancer and losing bowel control. Patients readily accepted troublesome symptoms as a normal part of life, reports Sharon Dudley-Brown of the Johns Hopkins University School of Nursing, in an article published in the January 2012 issue of Gastroenterology Nursing.

“Previous studies suggested the quality of life was low in ulcerative colitis patients, and these surveys confirm that,” says Dudley-Brown. The impact of ulcerative colitis appears to be most profound in younger patients, who seem less able to adapt and cope with their disease than older patients, she notes.

The contrast between patient and physician perception of ulcerative colitis “is striking and a first in terms of ulcerative colitis patients,” says Dudley-Brown. For example, 84% of patients in the UC:NORMAL survey said, “I worry about the long-term health effects of having UC.” Barely half of physicians felt that this would be a concern to patients. Also about half of physicians (48%) felt that most patients had their symptoms under control, while only 1 of 5 patients (21%) said, “My symptoms were completely or mostly under control.”

The UC:NORMAL also showed that 8 of 10 ulcerative colitis patients believed that the quantity of flare-ups they experienced was “normal,” significantly more than patients with migraine headaches (64%) or asthma (75%). And ulcerative colitis patients were significantly more worried about disease complications (84%), depression (62%), and embarrassment (70%) than were patients with the other chronic conditions.

Keeping in mind the “impact of the disease and the seriousness of disease burden” is an important part of ulcerative colitis management, says Dudley-Brown. She adds that nurses can contribute to keeping the lines of communication open by encouraging patients to share their difficulties in dealing with the disease.