From the Journals

Gaps in ulcerative colitis care expectations, perceptions



Gaps in priorities and perceptions about managing disease exist between physicians and patients with ulcerative colitis (UC), according to survey findings recently published in Therapeutic Advances in Gastroenterology.

The results – which come from the Ulcerative Colitis Narrative Survey from Japan – point to the ongoing need to foster a good relationship between physicians and patients, even as treatment methods for UC become more sophisticated, wrote the researchers led by Kenji Watanabe, MD, PhD, professor of internal medicine at Keio (Japan) University.

“While adjustments of the treatment regimens according to the results of objective monitoring in the treat-to-target strategy have led to improvements in UC management, the importance of patient-physician communication should not be neglected, as shared decision-making is a major driver of treatment satisfaction,” they wrote.

The UC Narrative is a multinational initiative sponsored by Pfizer meant to identify barriers to care and find solutions to those barriers. A total of 210 patients and 151 physicians completed the survey.

Overall, 65% of patients said they wished they had more time at appointments with their physicians, and 52% said their physician rarely had time to address all their questions and concerns. The majority of physicians (79%) also said they wish they had more time at appointments.

About half of patients (54%) ranked avoiding toileting accidents as a top priority more than any other concern, but physicians perceived this as less of a concern, with just 28% saying it was a top priority. For physicians, healing of mucosa was the second-highest ranked concern, with 59% saying it was a top priority, compared with just 29% for patients, and they also overestimated the importance of avoiding hospitalization among patients (56% vs. 38%).

Most patients (72%) said they felt comfortable raising concerns with their physician. But of those, 66% said they wished they had talked more about their fears of medical treatments, 53% said they worried that they would be seen as difficult if they asked too many questions, and 51% said their physician rarely had time to address all of their concerns.

Still, 85% of patients said they were satisfied overall with the communication they have with their physician, while physicians underestimated patient satisfaction, thinking that just 71% of their patients are satisfied with the communication.

The survey also found that physicians were more likely to discuss treatment-related topics than quality of life topics. And 52% of patients said they felt their doctor could do better in explaining the hereditary nature of UC, and just over half (52%) said their physician could do better in helping them access information and support from patient advocacy organizations.

The survey also found problems with patients’ knowledge of ulcerative colitis. About 26% said they thought that if their symptoms were under control then their disease was not active, and 23% said they didn’t know it was important to keep their disease under control to reduce long-term complications.

The majority of patients (82%) said their UC was mentally exhausting, and 64% said they felt they would be more successful if they didn’t have UC.

“This survey highlights the importance of regularly monitoring patients’ mental health,” the researchers wrote.

Miguel Regueiro, MD, chair of the Digestive Disease & Surgery Institute at the Cleveland Clinic, said the findings illustrate the need for, and point to the challenges of establishing, quality communication between patients and physicians, which he said is “vitally important.”

“I find that physicians who listen, ask questions, and pause to hear the answers with honest dialogue on quality of life, have a physician-patient relationship that allows [them] to probe important topics of quality of life, depression, anxiety, stress,” he said. “As the Japanese study found, physicians may focus on the objective outcomes of UC treatment” – for example, mucosal healing – “but not always ask about the ‘whole person’ issues of UC,” such as quality of life.

According to Dr. Regueiro, Cleveland Clinic has developed an “IBD (inflammatory bowel disease) home” that includes doctors, dietitians, psychologists, nurses, and others that allows them to consider and manage many factors associated with the illness, not just the clinical picture.

“The team allows for the ‘How does UC impact you?’ discussions on a regular basis, and we have found that this whole-person approach is greatly appreciated by patients,” he said.

He suggested that physicians ask open-ended questions, such as: “What are two to three things that are bothering you or that you want out of the visit?”

“Even though one physician may not be able to address all of the problems,” he said, “the physician can start the narrative.”

The survey was sponsored by Pfizer. Dr. Watanabe reported receiving research funding or consulting fees from several companies including Pfizer, as well as Asahi Kasei Medical, Mitsubishi Tanabe, AbbVie Japan, Janssen, Takeda, and others. Dr. Regueiro reported advisory board work or consulting for AbbVie, Janssen, Takeda, Pfizer, Celgene, and other companies.

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