Overcome the communication disconnect to improve IBD patient care

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February 01, 2022

5 minute read


Source/Disclosures


Disclosures: Rubin reports receiving a grant from Takeda; and has consulted for Abbvie, Abgenomics, Arena Pharmaceuticals, Bellatrix Pharmaceuticals, Boehringer Ingelheim Ltd., Bristol-Myers Squibb, Celgene Corp/Syneos, Dizal Pharmaceuticals, Genentech/Roche, Gilead Sciences, Ichnos Sciences SA, InDex Pharmaceuticals, Iterative Scopes, Janssen Pharmaceuticals, Lilly, Pfizer, Prometheus Laboratories, Reistone, Takeda and Techlab Inc.


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The results of a new survey published in Inflammatory bowel diseases emphasize the need for improved communication between physicians and patients regarding the goals and expectations of IBD treatment.

The Global Assessment of Unmet Needs of Patients and Physicians in Inflammatory Bowel Disease (IBD GAPPS), a global initiative conducted in 2019 across 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 the physicians who treat them.

Healio spoke with David T. Rubin, MD, chief of the department of gastroenterology, hepatology and nutrition at the University of Medicine at Chicago and chair of the national scientific advisory committee for the Crohn’s & Colitis Foundation, about the survey and how doctors can solve the communication problem and improve the care of patients with IBD.

Helio: Why is it important for doctors and patients with IBD to communicate well?

Insist on: The key to caring for people as a healthcare professional is to communicate appropriately. If you cannot do this, the mismatch between management goals and patient expectations will lead to poor outcomes. It is certainly not new to appreciate the value of communication between patient and provider. But what hasn’t been fully explored is how to update patients appropriately when treatment goals have changed and when new therapies become available. This is an ongoing, dynamic and changing landscape that demands 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 that providers can understand their needs.

Helio: What can you tell us about the IBD GAPPS initiative?

Insist on: We hypothesized that there would be a mismatch between the expectations of patients with IBD and the goals of the physicians caring for them – that often patients live with expectations of the disease that are not the same as the objectives we have for their control and good health. health. The IBD GAPPS study was therefore designed to assess the unmet needs of patients living with ulcerative colitis and Crohn’s disease. In this global study, more than 2,300 patients and 654 physicians responded to surveys. The goal was to reassess the landscape: to determine what patients and providers thought of the care goals and to understand where there were similarities and differences between patients, so that we could then develop better tools and interventions. We recognize that providers, no matter how well-meaning, may not be aware of what their patients are going through most of the time.

We also highlighted the importance of understanding that our goals for managing patients might be mucosal healing or reducing the frequency of bleeding and bowel movements, but for patients their goals are often functional, such as going to the work or school or take care of their family. How to communicate these things and tie them together was a very important part of this effort. And all of this takes on added importance as we have worked to communicate with our patients during the pandemic.

Helio: How has telemedicine changed doctor-patient communication?

Insist on: The pandemic has highlighted the need for telehealth and led to its widespread use. What’s interesting is that on the one hand, it separates us from our patients: we can’t hold hands or do a physical exam. We can’t look them in the eye or read their body language. On the other hand, when we look at the camera of our computers and see our patients, in some ways we are even closer to them. It’s one-to-one communication: they can voice their concerns, and I think people have adapted to that pretty quickly. The challenge, however, has not been whether we feel connected, because I think people are used to using digital devices to communicate in this modern age, but rather whether we can use them effectively to communicate our goals and make sure we really know what we’re trying to do in the time we have.

One of the biggest obstacles to effective communication has to do with the length of the meeting. So if you have limited time and you’re the provider, you can focus on very objective things, like bleeding or the number of times a patient goes to the toilet. You may not have much time to ask him if he is able to have intimate relationships, how he is doing in school, or if his eating habits have changed because of his IBD. These questions take longer. I would say, whether you’re in person or doing telehealth, that’s a big challenge that we all face. With telehealth, it can be even more difficult because in addition to having these conversations over video, we review the electronic health record, try to document everything we discuss, and click many buttons. It becomes a big challenge.

Helio: What other important findings emerged from the survey?

Insist on: The first thing was the difference in the perception of what remission is for patients versus doctors. In the survey, patients identified remission as having no symptoms and exiting treatment. Perhaps because the term “remission” was adopted from oncology. When you’ve been in remission with cancer for long enough, we call it a cure, and we think drugs aren’t necessary, which is different from a chronic, relapsing, remitting disease like IBD. The perception among IBD patients might be that if they are stable enough and doing well, they might not need to take medication. However, when we asked providers what they thought remission was, 71% said it was normalization of lab values. In other words, more objective measures, such as hemoglobin or fecal calprotectin or even a litter result, to know that someone is in remission. If you’re a provider and you understand this very important definition of remission versus a patient who is symptom-focused or medication-focused, and you don’t connect those things in a meaningful way, that disconnect will lead patients to be less adherent to their therapy or thinking that if their symptoms improve, they are in remission and their disease is fine. We must emphasize that symptom control is critical to quality of life, but sustaining it involves confirming objective measures of disease control. This link is something we need to better explain and make sure people understand. I use the term “functional remission” which means that the patient feels well, functions and does all the things that are important to him. And it is different for each individual. Our job is to restore and maintain the quality of life. This is an important survey, but more important is what we do with the results.

Helio: How do you avoid the ongoing disconnect in communication between IBD patients and providers?

Insist on: We are gradually moving towards recognizing that these goals are all interrelated, and I honestly imagine that having communication models and using the same technology that we have for telehealth to communicate uniform treatment response expectations and management goals will be very helpful. In other words, use expert videos where they explain IBD and what patients should expect in terms of symptoms, medications, response to treatment, and chronic maintenance therapy. All these questions can be answered by appropriately developed and expertly recorded videos. Providers like me and others talk about this so that the busy community provider, who may be extremely skilled and very experienced but who has little time, can also refer patients to some of these resources, and maybe we can bridge the communication gap. Ultimately, by closing the gap, we’re going to do two things: we’re going to increase the number of people who have durable remission and better quality of life on the patient side, and we’re going to improve provider satisfaction and competence. on the side of the doctor and the advanced practice nurse.

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