IBD Drive Time: Oriana Damas, MD, on Treating Underserved Patients with IBD

In this episode of IBD Drive Time, Oriana Damas, MD, discusses what to be aware of when treating patients from underserved populations with IBD, as well as minority representation in research, with our hosts, Drs Millie Long and Ray Cross.

Oriana Damas, MD, is Director of Transnational Studies for the Crohn's and Colitis Center, and an assistant professor of clinical medicine at the University of Miami in Miami, Florida.

For more insights from experts like Dr Damas, visit the Inflammatory Bowel Disease Excellence Forum.

TRANSCRIPT

Millie Long, MD: Hello, this is Millie Long from University of North Carolina. I am one of the co-hosts of IBD Drive Time. And I am thrilled to start off this episode by introducing Oriana Damas, who is assistant professor of medicine at University of Miami, and she's also their director of translational studies at the Crohn's and Colitis Center. Oriana, we're thrilled to have you join us for the next 20 minutes.

Oriana Damas, MD: Thank you, Millie. I'm happy to be listening in and participating in your podcast today.

Dr Long: Fantastic. Well, so I know that you have a number of different areas of research interests, and the first one I'd like to focus on is I know you've done prior work on the clinical presentation of patients with IBD and how this differs based on race and ethnicity. Would you mind kind of telling us about this and how we should be thinking about this as we approach our patients?

Dr Damas: Thanks, Millie. Yeah, that's a great point. I've done several work with relations to Hispanics in particular, their age of presentation. I've looked at their IBD phenotype. Being here in South Florida, we have a large Hispanic population, primarily composed of patients from the Caribbean, so a lot of Cubans, and we also have a lot of South Americans.

So in that way, it's also been a little bit different and unique to describe our population here of Hispanics, because they don't tend to mirror that what is, or what is seen in the rest of the country, which tends to be more Puerto Ricans or Mexican Americans. So we have that. And what I've seen so far, a couple of things, I mean, I think I've studied that in several different waves, but what's important from the studies that I've done so far is that age of presentation seems to be the one factor that consistently shows across my studies. And in those studies, it reported in Hispanics in other parts of the country, as well as in Latin America.

So what I mean by that is that when I looked at patients that were born outside of the United States and who had developed IBD, they tended to have an older age of presentation compared to patients that were US born. And even within just one generation of US born Hispanics, we found an age of presentation of IBD. And by that, I mean, symptom onset, not necessarily just diagnosis. We found that patients then mirrored the age of presentation to their non-Hispanic white Caucasians. And so it tells us a story about maybe this expo zone or duration of time in the US or Western country that may then perhaps onset, like trigger an onset of IBD, right, in that setting. And that's been the main thing that I have found in relationship to differences in the phenotype of IBD patients in minorities in particular in Hispanics.

And I did a epidemiologic study of patients developing IBD in Colombia. And I found the same thing. I found that patients that were diagnosed and had symptoms develop of Crohn's disease and ulcerative colitis in Colombia also had unanimously an older age of presentation, typically under 40s and late 30s compared to the population of even US born Hispanics in the US, right, or Europeans or Caucasians in the US. And so, again, that validates all also what the findings that I have found here for our cohort, because some can argue there can be a little bit of migration bias, maybe those that are healthier migrate later. But if we find the same trends in their native countries, then we can see that maybe there's something environmental that's changing and that perhaps it takes a little bit longer to develop in the native country. Beyond that, what I've also found is maybe a little bit of a difference in biologic use, hospitalization and surgery rates in patients that were Hispanic.

But I think that's a little bit difficult to tease out because these are mainly retrospective studies. And so, and that mirrors the literature that's also available in the United States for other Hispanic studies. So mostly retrospective looking at surgeries, phenotype, hospitalizations, and medication use, including biologics. And so, because it's a little bit difficult to discern between, is it truly a phenotype difference versus simply just an issue of access to care or when they present to the clinic, is it to late? We know that African Americans, for example, have an increased use of ER visits, for example, when compared to other groups. And so I think in that sense, it's a little bit difficult to discern and we don't really have great data on that yet.

Dr Long: No, and it's so intriguing, isn't it? So this observation that they kind of take on the time of onset of disease, of the new country, where they are, obviously here in the US. What are your hypotheses? I know you've done a lot of work with diet, and I know that obvious some of that work has more to do with treatment of inflammatory bowel disease, once it's there. But do you think that the change in diet with moving to the US may actually be one of the factors that impacts this onset of disease?

Dr Damas: Yeah, absolutely Millie. I think that, and that's actually one of the NIH study that I have is looking at dietary patterns in Hispanic, who come to the United States and looking at their stool microbiome in combination with their genetics to better understand risk, but also ongoing or risk for ongoing inflammation and flare ups. And so it is an area that I'm actively studying, but I do think to answer your question that as Hispanics come to the United States, and that can, I'm talking about Hispanics because this is the area of research that I'm doing, but I think that can also speak largely for other immigrant populations, like a lot of Asians, for example, developing IBD when they come to the United States as well. And so when they come here, there's a stress factor, which is so far unmeasured.

And I hope to study that in the near future, but there's also, an adoption of all sorts of cultural preferences that are more inherent to the United States, like a Western diet, for example. Right. So, and we know that in epidemiologic studies that have been done in large population studies that have followed patients over time, like the nurses health study, we know that a Western diet has increased the risk for development of IBD in these large cohorts. So I think in large part, it has to do with diet. Definitely.

Dr Long: And I think that one of the things that we had actually kind of discussed a little bit even before this podcast, is that we also have to understand kind of the cultural aspects of our patients diet. And I think that I struggle with this in my clinic. Patients ask for diet recommendations if they have Crohn's disease in particular. And how do you approach that? What is the best data we have surrounding diet and how can we be more culturally sensitive surrounding that? Because obviously people of different ethnicities have different dietary kind of histories and staples that they use that may or may not be a part of, kind of a standardized diet that we might recommend here in the West.

Dr Damas: Right. Millie, I mean, you answered, and you mentioned one of my main topics of interest right now. I'm writing a paper on it. We're so focused as clinicians on trying to provide what's the best anti-inflammatory diet for our patient. And that, I'll put with an asterisk because we still don't truly know that. And I think until we have better gauge and larger studies and a better gauge on personalized nutrition, meaning like what type of dietary pattern is better for a person's profile. And that can be something in the future relating to their microbiome, perhaps biomarkers that we can identify, but we're not there yet. So, but going back to your question, I think we're so focus on identifying what are the absolute anti-inflammatory diets that will be perfect for our patients, that we oftentimes don't think about the cultural aspects. Right.

And whether there's going to be dietary adherence. And so I have a large population of Hispanic patients and I'm Hispanic myself. So I know that it's going to be hard to get a patient who's been eating a lot of starchy vegetables, for example, there's like yucca and cassava, boniato in Spanish. I don't even know how to say it in English. These are parts and important components of the diet of our patients, but they remain understudied and they are not comprised of actually, most of the diet so far exclude starchy vegetables from being part of the diet for these anti-inflammatory diets. So this is a challenge because I think that once we establish what is a great anti-inflammatory diet, and I think we will get there, we have to also think about adherence, right? Not to get too deviated on like vaccines, but look what happened to vaccines, for example, right?

We were so focused on finding what's the most efficacious vaccine that we can get for COVID, but then we didn't think about, well, how is the public going to think about vaccines and is there going to be a vaccine hesitancy? So in that same way, we have to project our research to not only focus on what are the right anti-inflammatory properties for each patient, which I think is important, but equally so we have to think about adherence. And so I hope that some of my research will help to highlight that. And I hope to publish one of those soon because there may be even components of diets in other cultural places, right? Like for example, diets of starchy vegetables, maybe they could be anti-inflammatory, but because we haven't explored them, we're not incorporating them.

Dr Long: Huge unmet need. Huge. And so I really look forward to seeing more of your work to help us to guide this. As we take a pause here, I just wanted to, of course mention that this podcast is brought to you by the Gastroenterology Learning Network, also by Advances in IBD. We do have upcoming regional Advances in IBD events, both in person and virtual. And I'd encourage you to check out those options for IBD education. So Oriana, in kind of the second half of questions, obviously you mentioned that you are Hispanic as well. As a physician who's underrepresented in medicine yourself, what are some strategies you use that you can teach us to be able to build trust with patients from underrepresented communities?

Millie, that's a tough question, but a good one and a very important one. I do think that being an immigrant myself, perhaps I have a little bit just more inherent sympathy for the struggles that some patients go through. I don't know. Right. But I think maybe that's one of the factors. I think that they believe patients, for example, is non compliant or thinking about why didn't they adhere to this diet that I recommended, or this medication. So thinking a little bit deeper about what are some of the social determinant drivers and what are some of the cultural drivers that may have led my patient to perhaps end up in the ER, or led my patient to not come to my visits. Right. Those are things that we have to consider as we're taking care of traditionally underrepresented populations with already access to care issues.

So perhaps not thinking about your patient as, okay, well, this patient just doesn't show up because they don't care. Think about what are the layers that led to that problem. And I think that's an important point for us in medicine. Because we're sometimes so focused on just trying to get our patients better, that if they're not following the plan, for whatever reason that may be, we may get frustrated, but it's important to understand on a deeper level. And I don't think that it needs to be like a psychological assessment either, but just kind of keep that in the back of your mind as a provider, when you're taking care of patients that have access to care issues. Additionally, I think language barrier may be a problem, maybe some health literacy in some immigrant populations. Obviously I'm a Spanish native speaker, so that is not a problem.

But if you're not, I do think that trying to seek out ways so that you can communicate with those patients, if there's a true language barrier, using interpreters is going to be important. Because in the end, I think patients what they need is to understand their doctor and most importantly, to trust their doctor. So if there's good communication, whether or not they're from the same race and or ethnicity, I think you can really establish a lot. And you can truly make a difference for those patients because I've actually had patients like black American, black, American young man, I remember very well, kept on going to the ER.

I didn't quite understand. It was really just issues relating to questions that he could have just asked me himself during clinic visits or placed a phone call. After I just simply asked him that question, why are you going, why you're not reaching out to me? He said, I never really considered it. And then thereafter, you should see how amazing on epic, there's really no reds of ER visits anymore because now anytime he has an issue, he knows to call me and contact me. So sometimes it's just as obvious as simply having an open communication line with your patient. And I think that's important when there's a little bit of reservation, a little bit of issues with health literacy, language barriers, things like this that may make it even harder for them to communicate and not outright just say it.

Dr Long: No, absolutely. And I love your recommendation to kind of take a step back if someone is not being inherent to medication and ask yourself why. And are there resources or education we can help with to help them to be compliant? Because like you, I've found that many, many times that it's actually not that they didn't want to be compliant. It was either a lack of understanding, a lack of ability to access the system in regards to refills. And they're just ways we can really help those patients. So huge, wonderful recommendation. All right.

So one of my last questions. You and I both do a good bit of research and I think that you and I both know that in all of the major trials out there, when you look the vast majority of the included population is not a minority. And so it's hard in many instances to extrapolate those data. We really want to enhance and improve minority recruitment to clinical trials. Do you have any ideas in that space for how we can encourage our patients? Whether or not our listeners have access to a trials unit themselves, they likely live relatively close to a major academic center that does. How can we encourage our minority patients to consider those opportunities?

Dr Damas: Millie, I think that's a tough one. I don't think there's any true data that would give us and highlight what are specific barriers to enrollment of clinical trials for minorities. I'll tell you from my experience that we have a pretty good report. I think it has to do also with the report of the patients, how they feel in the clinic and with recruitment, with the coordinators, making sure that the coordinators understand differences in cultural backgrounds, having perhaps coordinators that speak the language would be very important. Naturally here we have a huge Hispanic ward of research patients. And I think when I step back and try to think why is that so? I mean, not only is our population in South Florida comprised of largely of Hispanic patients, but I think in addition to that, when I compare, for example, patients that I recruit from my clinic, from our IBD center compared to patients that I recruit, because we also recruit from community GI clinics.

There tends to be a little bit of a fall in the recruitment and in the retention rate in patients that I recruit from other places. And I think it has to be because we have like, almost like a research enterprise in our facility where patients know that we're doing research, patients trust the research that we're doing because we're talking about it, as providers we talk about the research that we're mentioning and that we're recruiting for it. Right. So, and again, I think having coordinators and just all the staff that collects data on the patients, having them be able to speak the language is huge. So those are some good ways. And in other scenarios, however, I think that it can get a little bit more challenging when you don't have a large population of minorities.

And so I think in that sense and I think the trialist, and the researchers are thinking about these studies, I think, and we're seeing this happen more and more now, which is fantastic. But I think when you're developing a trial, you have to think about how can I make my cohort more diverse. And I think that has to be like something actionable that the PI has to, the principal and investigator has to think about now, because we just have to make our studies more generalizable to the US population. Right.

So in that sense, thinking about that as a step towards your study, I think collaboration with centers that have a large retention rate of different minorities who have already kind of solved part of that puzzle, right, is going to be important. So I think it's going to be about making sure that your own study at your center is thinking about culturally appropriate ways to retain those patients. But beyond that, thinking about it actively, when you're doing a multi-center study, how can I attain retention site or sites that have more culturally diverse patients that I can also include in my trials?

Dr Long: No, I think those are great points. And I'd like to emphasize to our listeners who may not have a research trials unit in their own clinic that when the Crohn's and Colitis Foundation did a survey of patients a few years ago, the most important factor that made them want to participate in a trial was support of their primary gastroenterologist. Meaning even if you're not a trialist, if you helped to introduce the idea of a trial, that this could be an option and that you would support it, I think that would really help patients to pursue and seek participation. You have taught us, we've gone through kind of differences and based on race and ethnicity surrounding development of disease, different dietary considerations in terms of management of disease from a dietary perspective. And obviously we've talked a good bit about communication and engagement with patients from underrepresented communities. So I am going to turn it over to my co-host Ray Cross to ask you the very most fun question of all of our segments. And so take it away Ray.

Ray Cross, MD: Great Millie. Thanks. Oriana, this is the fun question. So tell our listeners something about yourself that they would not know.

Dr Damas: Oh gosh. I mean, I think there's a couple of things. I think people tend to think us IBD doctors maybe are a little nerdy. One thing that I did that you would never even think is that I scuba dive and I have done it since college, not since kids actually, but one of my biggest adventures was going to the Bahamas and scuba diving with a couple of sharks. I still can't believe I did that now, but yeah, that's my big fun adventure.

Dr Cross: And Millie what's better Ben Click as a skate rat with green hair or Oriana scuba diving with sharks? Which is more impressive?

Dr Long: They're both very impressive. And I have to admit, I have done neither, but I want to. The scuba diving, I think in particular sounds fun. Oriana, you might have to teach me in the future.

Dr Damas: I have to say that the sharks were not on purpose. I just kind of went down there and then we found them. So, but I can still take equal credit because I did it and didn't panic as much.

Dr Long: That's great. Well, thank you so much for joining us for this episode of IBD Drive Time. On behalf of Ray and myself we hope to see you for our next episode. And just a final reminder. Again, our sponsor is the Gastroenterology Learning Network and please do be on the lookout for the Advances in IBD regional series.

Dr Damas: Thank you so much for having me.