Putting Patients First: Breaking Stigma, Dispelling Misconceptions to Improve IBS Care

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In recognition of World IBS Day, we spoke with Jeffrey Roberts about what led him to found the holiday in 2019 and took a closer look at the continued marginalization of the condition.

Despite being one of the most common conditions diagnosed by gastroenterologists and affecting 10-15% of people in the US, irritable bowel syndrome (IBS) continues to be a largely marginalized condition, leaving many patients to suffer in silence.1

Like many with IBS, Jeffrey Roberts struggled to find adequate care as he moved from doctor to doctor to find somebody who did not think his health issues were “all in his head.” From the time he was initially diagnosed with IBS as a teenager to when he received an additional Crohn’s disease diagnosis in his 40s, Roberts described difficulty finding someone who understood the quality of life issues he was suffering.

“When I was first diagnosed, there was so little information that was available that I actually went and started to research treatment options and physicians who were doing research that I could leverage,” Roberts explained in an interview with HCPLive. “That's how I started attending medical conferences in order to really bring information back to patients. The idea was okay, I'm treating myself, but I want to be able to be knowledgeable to provide different treatment options for different types of patients, or even to help them have a conversation with their physician in the language that the physician would understand.”

Roberts’ work as a patient advocate began in 1995 when he founded the first IBS patient community website. He later launched the IBS Patient Support Group community in 2016 as a public education advocacy community, co-founded Tuesday Night IBS, and eventually went on to create World IBS Day in 2019.2,3

Although April has previously been coined IBS Awareness Month, Roberts explained how no one was “directing the traffic” and he thought it would be more beneficial to choose a single day to focus all attention to raise awareness and encourage patients to seek care for any symptoms they may be experiencing. Although he acknowledged IBS care has come a long way since he was first diagnosed, he also pointed to a number of lingering issues that he hopes to help address with his patient advocacy work.

“Years ago, because our understanding of the brain-gut axis was only in its early stages, some providers did tell patients that all of their symptoms were ‘in their head’ because routine testing at that time could not identify the cause of their symptoms,” Brian Lacy, MD, PhD, a gastroenterologist at Mayo Clinic in Jacksonville, explained in an interview with HCPLive, noting this understanding has evolved in recent years. “We now know that psychological distress can affect the brain, which can then affect the gut. Thus, some patients with IBS may have a flare of their symptoms due to ongoing psychological distress, but it is important to point out that anxiety by itself, or depression, does not directly cause IBS.”

Despite recent advancements in the understanding of the true mechanisms behind IBS, important misconceptions remain among health care providers and continue to negatively impact the care patients receive.

In an interview with HCPLive, Hannibal Person, MD, assistant professor and medical director of the Center for Diversity and Health Equity at the University of Washington, explained how a lot of providers continue to see and treat IBS as a purely psychological condition despite evidence against this notion, saying “they tell their patients to sleep better, drink water, and manage their stress, even though there are all these other treatment opportunities, some of which are highly evidence-based, and there are guidelines.”

Even among those who acknowledge IBS as more than just a psychological condition, its previous reputation as a “diagnosis of exclusion” has lingered and continues to influence many clinicians’ approaches toward evaluating, managing, and treating IBS.

“It was taught in the distant past that IBS was a diagnosis of exclusion and that patients had to undergo a battery of tests in order to make that diagnosis,” Lacy said, explaining how some providers continue to rush into labeling patients as having IBS if they have gastrointestinal symptoms not readily diagnosed as something like inflammatory bowel disease or gastroesophageal reflux.

Anthony Lembo, MD, vice chair of research at Cleveland Clinic Digestive Disease Institute, described a similar diagnostic process, saying “20 years ago, they would do every test and then say it's IBS, or they would lump everybody with any symptom or GI issue that they couldn't explain into the same IBS group.”

In 2021, the American College of Gastroenterology released the first clinical guideline for the management of IBS with the goal of identifying and answering key diagnostic and clinical questions. Key recommendations included:

  • Use of a positive diagnostic strategy as compared to a diagnostic strategy of exclusion to improve time to initiating appropriate therapy.
  • Perform serologic testing to rule out celiac disease in patients with IBS and diarrhea symptoms, and check fecal calprotectin in patients with suspected IBS and diarrhea symptoms to rule out inflammatory bowel disease.
  • Limited trial of a low FODMAP diet in patients with IBS to improve global symptoms.
  • Use chloride channel activators and guanylate cyclase activators to treat global IBS with constipation symptoms.
  • Use rifaximin to treat global IBS with diarrhea symptoms, and use gut-directed psychotherapy to treat global IBS symptoms.

Investigators asserted these recommendations, in addition to other statements and information from the guideline regarding diagnostic strategies, specific drugs, doses, and duration of therapy, would influence new guidelines, assist in pharmaceutical and diet development, direct changes in study design, and inform regulatory agencies.4

However, even with these guidelines providing a clear outline of the management of IBS, many clinicians continue to dismiss these patients, something Lembo attributed to the combination of gastrointestinal and psychosocial of IBS that frustrate clinicians and cause them to push patients away.

Lacy offered a similar explanation, saying “Some health care providers are still not quite as knowledgeable about the brain-gut axis and disorders of gut-brain interaction, so they may tell their patients that ‘there is nothing more to do to treat their condition’ when in fact there are multiple treatment options available.”

Although Mark Pimentel, MD, executive director of the Medically Associated Science and Technology (MAST) Program at Cedars-Sinai, sympathized with primary care and the need to keep up with the latest news in so many disease spaces, he also acknowledged “There is education out there, and IBS is not a rare condition. You should be versed in it.”

He continued by pointing out fundamental issues with the name irritable bowel syndrome, saying it means “You're irritable, you have a bowel problem, and it's a syndrome, which means we don't know what's going on,” and further emphasizing the importance of uncovering the root causes of IBS to ascertain its organic basis and eventually dispel widespread misconceptions about it, even down to its name.

However, this will not be an easy feat, something Pimentel attributed largely to a lack of funding. Specifically, he referenced how Crohn’s disease affects a fraction of the people IBS does but gets far more funding. To receive better funding and ultimately help patients achieve better outcomes, Pimentel highlighted the need for a better understanding of the biological causes of IBS.

Roberts expressed hope that advocacy efforts like World IBS Day will help accomplish this in the future, concluding “I’m really excited that it has caught on. Every disease seems to have a day, and so IBS now has its day, April the 19th.”

References:

  1. American College of Gastroenterology. Irritable Bowel Syndrome (IBS). Accessed April 19, 2024. https://gi.org/topics/irritable-bowel-syndrome/
  2. IBS Patient Support Group. Who We Are. August 12, 2023. Accessed April 19, 2024. https://www.ibspatient.org/who-we-are/
  3. Tuesday Night IBS. Who We Are. Accessed April 19, 2024. https://www.tuesdaynightibs.com/who-we-are
  4. Lacy BE, Pimentel M, Brenner DM, et al. ACG Clinical Guideline: Management of Irritable Bowel Syndrome. The American Journal of Gastroenterology. doi:10.14309/ajg.0000000000001036
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