Neilanjan Nandi, MD, on the Biggest Challenges in IBD

Dr Nandi reviews some of the major challenges that providers of IBD care may face, including the need to counter disinformation some patients may have read on social media, and the social determinants of health that can complicate IBD treatment.

Neilanjan Nandi, MD, is associate professor of Clinical Medicine in the Inflammatory Bowel Diseases Center of Penn Presbyterian Medical Center, University of Pennsylvania, Philadelphia.

TRANSCRIPT:

Greetings. My name is Dr. Neil Nandi. I'm an associate professor of clinical medicine at the Pearlman School of Medicine at the University of Pennsylvania in Philadelphia, Pennsylvania. At this year's 2023 AIBD I had the distinguished privilege of presenting, what are the biggest challenges that IBD practitioners face in managing inflammatory bowel disease. Now, no doubt, this is a very large topic, and our distinguished panel of speakers throughout the several days of the conference address many of the most poignant topics. However, I wanted to focus on a few things that are sometimes not emphasized enough, particularly social determinants of health in managing and optimizing diagnosis and treatment in underprivileged populations and the burden of misinformation in an information age era. Over the last two decades, we've seen an explosion in our IBD tool and armamentarium, multiple biologics and small molecules. Currently for ulcerative colitis alone, we have 6 different mechanisms of action and more on the horizon.

We've actually shown data that demonstrates that in the biologic era post 2000, we are making headway in reducing the amount of surgical interventions for both Crohn's patients and ulcerative colitis patients. So we are making progress; however, are we optimizing early diagnosis and treatment for those patients who are more disadvantaged? Most studies to date have demonstrated a predominance of inflammatory bowel disease in Caucasian European populations. However, more and more data demonstrate an increasing prevalence in ethnic and underprivileged populations. We've historically seen less common incidence and prevalence of Crohn's and ulcerative colitis in Black, Asian, and Hispanic ethnicities. However, some of the data is confounded by misclassification due to our current systems, which do not demonstrate a consistent way of actually categorizing how diverse an Asian or Black or Hispanic population may be.

By 2044, the USA will become a majority minority nation. Current data show that 1974 to 2010, the increased prevalence of IBD in White patients was 39 per 100,000 person years. But among nonwhite patients, it was 134%. So we're actually seeing an increase in non-Hispanic White and non-Hispanic Black populations. This is extremely important and we see this play out in even other underrepresented ethnic communities such as South Asian inflammatory bowel disease, where we also see an increasing prevalence of Crohn's and ulcerative colitis.

Not only is the prevalence increasing in underrepresented minorities, we're also seeing more severe IBD phenotypes. A couple of studies have demonstrated consistently that African-American Crohn's patients with more severe Crohn's disease phenotypes exist than their counterparts. Foreign-born Hispanics have a later age of diagnosis, and African-Americans may often be diagnosed 12 years after symptoms sourcing delays in IBD presentation in diagnosis. And the etiology of that is complex. Is it from cultural aspects or access or education in the community?

Minorities also seem to demonstrate reduced prescription rates of IBD medications. In fact, one study from 2022 demonstrated that African-Americans were less likely than their White counterparts to be treated with IBD medications. We also see that fewer African-Americans than White IBD patients may actually receive care from an IBD-specific consultant. So the data is clear. We need to be recognizing that there's an increasing prevalence of IBD in underrepresented ethnic minorities, and that there may be a reduced prescription of drug, more severe phenotype, and maybe even a delayed diagnosis later on in the disease cycle, which may present with more severe complications.

There's also a lack of literature and research and how do we address inflammatory bowel disease in our sexual and gender minorities. Sexual and gender minorities are—SGM—refers to what has previously been considered as LGBTQ plus.
However, that is a very, very limited description. Sexual and gender minorities include, but not limited to lesbian, gay, bisexual, asexual, transgender, two-spirit, queer and or intersex. Also, same sex or gender attractions or behaviors. And those with a difference in sex element are also included. So this is a very large swath that we're kind of lumping, which is truly unfair in a sense, but at least recognizes that not everyone may follow same heterosexual patterns that are traditionally thought of in medicine and sexual and gender minorities are at risk for inflammatory bowel disease. Whereas 7% of the general US population identifies as being in this collective group, about 20% of Generation Z identify as SGM. So it's important that we recognize various topics such as how do we participate in anal-receptive intercourse that is both a heterosexual and nonheterosexual practice. How do we discuss inflammatory bowel disease in the context of immunosuppression in those who have anal-receptive intercourse or in lesbian communities?

So there are multiple areas within this that we are not exploring and that we need to do more research in. Ultimately, ethnicity and gender may come down, may be affected by social determinants of health. We hear about it, we talk about it, but how much are we doing about it? Indeed one's birth cycle, if you're born into a environment that has limited education, less economic stability,  level of education that you have access to the social context, your safety of your community, and even the health care system access, these things have profound effects on how one may have diagnosis of inflammatory bowel disease recognition and therefore treatment. They're both, they're actually upstream, midstream, and downstream determinants of health that affect the individual patient and have severe consequences. One's race, poverty, zip code, gender and lack of insurance may affect financial toxicity and affordability of care, access to housing, a refrigerator, even limited transportation.

And ultimately this can affect not only the delayed diagnosis that I've talked about, but the severity of flare, access to steroids, duration of steroids —perhaps are treated too long— and how often one might need emergency room visits, hospitalizations, and or surgical interventions. It is incredibly important that we as clinicians recognize that many of the patients we are treating in 2023 into 2024 will not have equitable access to care. So the first thing is recognition and being cognizant of this, recognize that ethnic minority populations in your very clinic that you'll see today and tomorrow may have less access, and that we try to address what are the barriers to care. We also must understand that there is implicit bias in many of us that we all want to do better about. And so many hospitals, systems, institutions do provide implicit bias training for all members of the health care team, from clinicians to the front desk staff, and likely your hospital has this education and you can seek it and improve upon that and focus on how to break down these barriers.

Also, recognizing that culturally competent care is necessary too. You know, dietary components may be affected by one's religion. Access to certain medications, where they're derived from, may affect which types of treatment a patient may be acceptable of. So asking about religion, ethnicity, cultural barriers, these are also very important as well. Ultimately, we can work together as a community to recognize and elevate access and the quality of care delivered to those who are ethnic or minority populations to ultimately achieve much, much better outcomes.

Most important and tantamount to this is the information disorder that is happening now in the rise of social media. We have seen that there is, that this is a primary modality of news and education. While there is very good information to be propagated, there's also much misinformation from those who are not experts trying to do goodwill. And then there's also intentional malinformation or disinformation for those who have secondary agendas, hidden agendas, and we need to combat this. No doubt you've had the patient in clinic who's challenged a notion of a treatment or brought a complement, alternative therapy that may be more misguided than evidence would substantiate, and you've had to spend countless amount of time trying to restructure that or provide evidence to the contrary. This can be very frustrating. We have long known that a structured IBD patient curriculum can actually improve outcomes. In 2005, there was a wonderful randomized controlled study that looked at a group of patients that were half randomized to receive a structured IBD education curriculum and the others traditional in-office care and on the spot education. And they found, not surprisingly, that the proactive curriculum education group actually had higher knowledge scores, perceived knowledge, patient satisfaction in their care, lower medication, nonadherence and lower healthcare resource utilization.

And yet in 2023, 2024, nearly 20 years later, we are still emphasizing the need for education and the need for biopsychosocial model, and optimizing all these social determinants. Education is key and patients are continually, continuously turning to social media and the worldwide web for more and more information. In fact, one study showed that the top 3 digital sources of education that impact chronic health are number 1, social media, 2, the electronic medical record, and 3, websites. Never more than ever has the clinician's primary role as an educator to demystify and to downgrade falsehoods been more important. In 2018, McDermott and colleagues demonstrated a study where they were able to find that patients definitely wanted information from their IBD clinician. They wanted resources and trusted those resources more than those they were finding on their own. So this means an opportunity.

Remember to listen to your patients, ask them where they get their sources of data. Things you can concretely do is if they read something questionable, have them copy and paste it to you. You can utilize BMR Smart phrases, collect resources that you trust as a clinician and provide those to your patients at every single visit. It turns out that your patients have a relationship with you and they will trust you far more than those on the social media circuit than you think. Dissemination is not narcissism. In fact, it is more paramount that you speak up and be that voice of truth. Your patients will listen. It will strengthen your patient relationship and their adherence to your recommendations. And wise counsel, I hope this has been helpful. We together can make a difference in combating social determinants of health that would otherwise negate the beneficial care that we give to our patients, and we can make a difference in empowering our patients with good trustworthy education. Thank you.