Q&A: Conquer communication disconnect to elevate IBD patient care
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Results from a new survey published in Inflammatory Bowel Diseases highlight the need for improved communication between physicians and patients regarding IBD treatment goals and expectations.
The Inflammatory Bowel Disease Global Assessment of Patient and Physician Unmet Needs Survey (IBD GAPPS), a global initiative conducted in 2019 throughout North America and Europe, was designed to better understand the needs of patients with Crohn’s disease and ulcerative colitis, as well as the needs of physicians who treat them.
Healio spoke with David T. Rubin, MD, chief of gastroenterology, hepatology and nutrition at University of Chicago Medicine and chair of the National Scientific Advisory Committee at the Crohn’s & Colitis Foundation, about the survey and how physicians can address the communication disconnect and improve IBD patient care.
Healio: Why is it important for physicians and IBD patients to communicate well?
Rubin: The key to taking care of people as a health care professional is to communicate appropriately. If you can’t do that, then the mismatch between management goals and the patient’s expectations will lead to poor outcomes. It is certainly not new to appreciate the value of patient and provider communication. But what has not fully been explored is how to appropriately update patients when treatment goals have evolved and when new therapies become available. It is an ongoing, dynamic, and changing landscape that requires that we continue to pay attention and work harder to get everyone on the same page so that patients can expect and demand more from their treatment plans, and providers can understand their needs.
Healio: What can you tell us about the IBD GAPPS initiative?
Rubin: We hypothesized that there was going to be a mismatch between the expectations of patients with IBD and the goals of physicians who care for them- that often patients are living with disease expectations that are not the same as the goals we have for their control and good health. The IBD GAPPS study was therefore designed to assess the unmet needs of patients who live with ulcerative colitis and Crohn’s disease. In this global study, there were more than 2,300 patients and 654 physicians who completed the surveys. The whole point of it was to reassess the landscape: to determine what patients and providers were thinking about goals for management and to understand where there were similarities and differences from patients, so that we could subsequently develop better tools and interventions. We recognize that providers, as well-meaning as they may be, might not be in touch with what their patients are living with most of the time.
We also emphasized the importance of understanding that our goals for managing patients might be mucosal healing or to reduce bleeding and stool frequency, but for patients, their goals are often functional, such as going to work or school or taking care of their family. The way to communicate these things and tie them together was a very important part of this effort. And all of this takes on additional importance as we have worked to communicate with our patients during the pandemic.
Healio: How has telemedicine changed physician and patient communication?
Rubin: The pandemic highlighted the need for telehealth and led to the widespread use of it. The interesting thing is that on the one hand, it separates us from our patients: We can't hold a hand or do a physical exam. We can't look into their eyes or read their body language. On the other hand, when we look into the camera on our computers and see our patients, in some ways we are even closer to them. It’s one-on-one communication: They can express their concerns, and I think people adapted to it pretty quickly. The challenge, however, has not been in whether we feel connected, because I think people are used to using digital devices to communicate in this modern era, but rather whether we can use them effectively to communicate our goals and to make sure we truly know what we are trying to do within the time we have.
One of the biggest barriers to effective communication has to do with the amount of time for the encounter. So, if you have a limited amount of time, and you are the provider, you might focus on very objective things, like bleeding or the number of times a patient uses the bathroom. You may not have much time to ask whether they are able to be intimate, how they are functioning at school or whether their dietary habits changed because of their IBD. Those questions take more time. I would argue that whether you are in person or doing telehealth, it is a big challenge that we all face. With telehealth it may be even more challenging, because in addition to having these conversations by video, we are reviewing the electronic health record, trying to document everything we are discussing and clicking lots of buttons. It becomes a big challenge.
Healio: What other important findings came out of the survey?
Rubin: The number one thing was the difference in the perception of what remission is for patients vs. physicians. In the survey, patients identified that remission was having no symptoms and coming off therapy. Maybe because the term “remission” was adopted from oncology. When you are in remission with cancer for long enough, we call it a cure and we think medications are not needed, which is different from a chronic relapsing and remitting condition like IBD. The perception among patients with IBD might be that if they are stable enough and doing well, they might not need to be on medicine. However, when we asked the providers what they thought remission was, 71% of them said that it was normalization of laboratory values. In other words, more objective measures, such as hemoglobin or fecal calprotectin or even a scope result, to know that somebody is in remission. If you are a provider and you understand that very important definition of remission compared with a patient who is focused on symptoms or coming off medicines, and you don't tie those things together in a meaningful way, that disconnect is going to lead to patients being less adherent with their therapy or thinking that if their symptoms are better, they are in remission and their disease is OK. We have to emphasize that symptom control is critical to quality of life, but making it last includes confirming objective measures of disease control. That link is something that we need to do a better job explaining and making sure people understand. I use the term “functional remission,” meaning the patient is feeling well and functioning and doing all the things that are important to them. And that is different for each individual. Our job is to restore quality of life and maintain it. This is an important survey, but more important is what we do with the results.
Healio: How do you avoid the ongoing communication disconnect between IBD patients and providers?
Rubin: We are steadily moving toward the recognition that these goals are all interrelated, and I honestly imagine that having role model communications and using the same technology that we have for telehealth to communicate uniform expectations of responses to treatments and goals of management will be very helpful. In other words, use videos by experts where they explain IBD and what patients should expect in terms of symptoms, medications, response to therapy and chronic maintenance therapy. All those things can be answered by appropriately developed and expertly recorded videos. Providers like me and others talking through this so that the busy community provider, who may be extremely adept and very experienced but has limited time, can also refer patients to some of these resources, and maybe we can close the communication gap. The bottom line is, by closing the gap, we are going to do two things: We are going to increase the number of people who have sustained remission and improved quality of life on the patient side, and we are going to improve provider satisfaction and competency on the physician and advanced practice nurse side.
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Optimizing engagement to address the evolving needs of patients with IBD – Outlining critical communication gaps between patients and healthcare providers that must start to be addressed in 2022. https://www.understandingibd.com/assets/commercial/us/understandingIBD/en/pdf/IMM-US-2100706-IBD-GAPPS-Perspective-Paper.pdf. Published Aug. 2021. Accessed Jan. 27, 2022.
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