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Dr. Burrill B. Crohn Professor of Medicine
Chief of the Dr. Henry D. Janowitz Division of Gastroenterology
Mount Sinai Hospital
Chief, Division of Gastroenterology
Mount Sinai Health System
Director, Digestive Disease Institute
Icahn School of Medicine at Mount Sinai
New York, New York
Bruce E. Sands, MD, MS: consultant/advisor/speaker: AbbVie, Amgen, Arena Pharmaceuticals, AstraZeneca, Boehringer-Ingelheim, Bristol Myers Squibb, Celltrion, Fresenius Kabi, Genentech, GlaxoSmithKline, Janssen, Lilly, Merck, Pfizer, Sun Pharma, Takeda, Teva.
This commentary summarizes expert recommendations on optimizing care collaboration for patients with inflammatory bowel disease (IBD) as part of a comprehensive core IBD curriculum titled, “IBD Resource Center for Primary Care and Gastroenterology Professionals: Your One-Stop Shop for Managing IBD.”
Optimal Collaboration With Patients and Caregivers
It is very important for healthcare professionals (HCPs) to understand that patients’ goals and perspectives about their disease may not be exactly the same as their own. It is important for HCPs to consider how the disease is affecting the patient. Patients with IBD perceive a higher number of flares per year compared with their physicians, and patients report that the disease made their lives more difficult compared with the estimation of gastroenterologists. HCPs underestimate the psychological, social, and financial burden of IBD on their patients, and many patients consider their symptoms or flares to be normal and expected, which should not be the case.
For example, patients often express the desire to assess their disease through social measures, such as the capacity to perform at work and enjoy social and leisure activities. HCPs tend to focus on objective and scientific measures, such as clinical and histologic remission, which patients may not be able to appreciate. We try to reconcile these goals through shared decision-making. We want the healthcare team to discuss goals with patients and create mutual goals—when patients appreciate your goals for their care, their outcomes will improve over time.
The Importance of a Strong Infrastructure for Collaborative Care
Multiple HCPs are needed for direct IBD management, including at least 1 gastroenterologist with specialized IBD training. There also should be an endoscopy unit, good radiologic capabilities, a gastrointestinal histopathologist, a surgical program that performs at least 10 ileoanal pouch operations annually, and a trained colorectal surgeon. I also think we need dedicated IBD nurses who have the expertise to really manage these patients, guide them through the care process, and provide key education. The practice also should be integrated with a capable hospital emergency department, because often our patients do end up in the emergency room. There are several aspects to the care of these patients, and it can be daunting to connect with all the required disciplines.
Ideally, the treatment team would be part of an IBD unit or clinic, but if that is not feasible, you should endeavor to network with several other HCPs to provide comprehensive care. I believe that patients need access to all kinds of HCPs. Access to a good pharmacist is very useful for detailed medication education and assistance with drug access and affordability. Ophthalmology comes up often because patients may have eye complications with their IBD or from their medications, such as steroids. I often turn to the rheumatologist because arthralgias and arthritis are the most common extraintestinal manifestation associated with IBD, as well as to the dermatologist when patients have skin complications, another extraintestinal manifestation. Because our patients are relatively young, they may need gynecologists and obstetricians to weigh in. Dietitians or nutritionists can help ensure that patients avoid malnutrition and the associated consequences. In addition—and this is very important—because anxiety and depression are so common among our patients, we need access to mental health workers, psychologists, and social workers. It takes a small village in many ways.
When we think about collaboration for improved patient outcomes, it also demands a partnership with primary care providers. Their role is to recognize a possible IBD diagnosis in a timely fashion and refer to a gastroenterology expert, but after that they certainly can assist in monitoring the disease and treatment. I really encourage my patients to strengthen their relationship with their primary care provider to ensure this long-term management. Collaboration and good communication among patients, primary care providers, gastroenterologists, and other care team members really are needed for the best possible outcomes.
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