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Sunanda Kane, MD, MSPH: Hello. I'm Dr Sunanda Kane and my pronouns are she/her. Welcome to Medscape's InDiscussion series on ulcerative colitis. Today, we'll be discussing inclusive care of LGBTQIA+ patients with ulcerative colitis and our Pride Clinic in inflammatory bowel disease (IBD) here at Mayo Clinic. First, let me introduce my guest, Dr Victor Chedid. Dr Chedid is an assistant professor and a physician at Mayo Clinic in Rochester, specializing in gastroenterology and hepatology. In addition to his clinical activities, Dr Chedid is active in research and education. His research interests include health disparities in IBD, particularly in the LGBTQIA+ population, and the application of artificial intelligence in gastrointestinal disorders. Welcome to InDiscussion.
Victor Chedid, MD: Thank you, Dr Kane, for having me. I'm excited to be here. And my pronouns are he/him.
Kane: Perfect. I want us to start off with some definitions. There's a lot of confusion out there about all the different terms. Perhaps a little primer may help folks understand what it is that we're talking about.
Chedid: Absolutely. What's confusing about the sexual orientation or gender identity terminology is that it tends to get all mixed under the alphabet soup, if I may call it, of LGBTQIA+. The all-inclusive term we could be using is sexual and gender minority individuals, and this can include everybody who is not cisgender or heterosexual. It includes people with different or diverse sexual orientations or gender identities. So, what is LGBTQIA+? L stands for lesbian, G stands for gay, B stands for bisexual, T for transgender, Q for questioning or queer, I for intersex, A for asexual or agender, and the plus is for all the other diversities that are not included within the LGBTQIA+ term. Basically, if you say sexual and gender minority individuals, that is all encompassing of LGBTQIA+, and it includes a variety of sexual orientation and gender identities. These terms are not the same — they get conflated all the time, but they're not the same. I help myself and other people remember the difference using something called the gender bear. If you search for it online, you can find it. It's a small cartoon that shows you a little teddy bear, and it defines gender identity as coming from the brain. This means how you feel or how you see yourself — whether your gender identity is a man, woman, or anywhere in between, termed genderqueer. The next is the heart, which is sexual orientation or who you are attracted to. Either you're attracted to somebody of the same gender or somebody of different gender. You could be a man attracted to a man, a woman attracted to a woman, or anywhere in between, as well. And then there's your sex assigned at birth. This is whether you have the XX or XY chromosome or if you are intersex. Then there's gender expression, and this is how you express yourself — whether you have more masculine presentation, more feminine presentation, you're a mixture of both, or you're more androgynous. Using the bear can help clarify all this terminology.
Kane: I hadn't thought about trying to use a teddy bear for anything. I like that. So, how should we ask about a patient's sexual preferences and habits, particularly when we're talking about a condition like ulcerative colitis where there are a lot of issues with abdominal pain, diarrhea, and some nonglamorous types of issues going on.
Chedid: Absolutely. Whenever you're meeting anybody in clinic, the teaching from medical school is to approach every patient with curiosity and an open mind. This applies for LGBTQIA+ individuals and all individuals, for that matter. When you walk into your clinic to meet patients, don't make assumptions about the people in the room. Don't assume that someone is a patient's husband or wife or whoever. Do not assume. Walk in with an open mind and without any assumptions and just introduce yourself to the patient. You can also tell the patient your pronouns, which can help them feel welcome in your clinic. And then ask them who the person is who is with them. As part of your history taking, you can ask more specific questions as you go along. So, for example, when you're trying to get a better social history, you also might want to know who their partner is or if they have any partners. You might want to know a little bit more about their sexual health and sexual activity. That can have an impact on the care they're receiving, and it also can make them feel welcome in clinic. It can impact, as you were mentioning, several aspects of their care, so that's where you can ask these specific questions.
Kane: Well, that's really good to know. How comfortable do we have to be in our own identities to be able to do this for others?
Chedid: First of all, I tell everybody to not project your insecurities or your assumptions onto the patient in front of you. If your patient notices you're asking open-ended questions such as, "Who's that person with you today?" or "What do you do for sex?" or "What are certain sexual practices you engage in?" — then they will share with you. Many times, patients do not feel comfortable sharing with their doctors because we tend to either form assumptions in our questioning or we ask closed-ended questions. Or, the patient is not comfortable just because it's a topic that's uncomfortable. Unless you as a provider set the stage for a comfortable and safe space for your patient, the patient will not share this information with you. As I said, ask something like, "What do you do for sex?" or "What are different sexual practices that you engage in?" and then leave it there. See how the patient reacts, and see what the patient answers. That can lead you to the next question based on the response you get.
Kane: Got it. And are there things we should be looking out for in particular in the physical exam?
Chedid: The physical exam is an important part of every visit, in my opinion, because a lot can be revealed from a physical exam. But for every patient I see, whether they're LGBTQIA+ or heterosexual, I usually approach the physical exam assuming that they have been through trauma. I try to be very sensitive about the physical exam, and especially because within gastroenterology, we do a more intimate physical exam like the rectal exam. It's super important to know how to approach this, recognizing that many patients are not comfortable with a rectal exam, and to know there's a chunk of our patients who have had sexual trauma, which is more common among LGBTQIA+ individuals. When you approach a rectal exam, you want to explain to your patient why you are doing a rectal exam and what it involves. You can ask, "Who's going to be in the room with you?" You always have somebody, a chaperone, with you in the room, so the patient is comfortable, but let the patient lead in deciding who their chaperone will be. I usually ask the patient, "Who would you like to be with us in the room, and do you have any gender preference for the chaperone?" That way the patient feels that they're in control of who is with us in the room. Particularly with the transgender population, many of them are on a journey in their transition, whether they're receiving gender-affirming care or hormonal therapy, or if they've had gender-affirming surgeries. It's important for you, as you're approaching the physical exam, to know what your patient has gone through. And the best way to know is to ask your patient with humility and with an open-ended question like, "Have you received any gender-affirming care?" or "Where are you in your transition journey?" You could also give an anatomy survey to the patient to know if your trans male patient, for example, still has their uterus. Have they had their top surgery or do they use chest binders? That's important for you to know at the physical exam time, so you won't just tell them to take off their shirt. You have to be very careful about how you're approaching each and every patient.
Kane: Well, that's a lot to think about. I think all the things you've mentioned are so important, even the little things such as what to think about when you're going to have a patient change and what this means for the patient. I want to spend the rest of the time talking about the bigger picture and research you've been involved with in terms of health disparities in this population. In particular, I wanted to talk about surgery for ulcerative colitis and the J pouch, but then also what else you've been doing, the Pride Clinic, and the literature these days — what we can do as gastroenterologists to be very much in tune with what's going on.
Chedid: As you're very aware, Dr Kane, there's not much in the literature that covers the topics of sexual and gender minority individuals who have IBD and their healthcare needs. That's where our role is as leaders in the field. We need to address these questions through systematic and ethical research. We need to address many of these gaps in the literature. This will open further questions for us to explore, as well as improve the care that we provide our LGBTQIA+ individuals. We recently did a systematic review. It was accepted by a journal, but it is still under embargo. We looked at all the literature out there that explored the topics of sexual and gender minorities and IBD. Out of all the papers we identified in the literature; we found only 24 papers for which we could do the full text review. After reviewing all of them, there were only seven that met our inclusion criteria.
Kane: Victor, did you say seven?
Chedid: Just seven papers met our criteria. That speaks to how little we have out there. For several years, we explored everything in PubMed, Embase, and Scopus. It was true systematic review methodology. Out of these seven papers, the big theme was looking at the epidemiology of IBD in transgender people. That has been studied in only two papers that mainly looked at different autoimmune conditions including IBD in the transgender population. In these papers, the prevalence of IBD when comparing the transgender population to the cisgender population was equal. So, we don't think there's a difference in prevalence of IBD, but systematically this hasn't been studied in other folks who are lesbian or gay, for example. And for the cisgender control group, we don't know if there were people who are transgender included in that group because the control group was mainly from people who were in a clinic receiving transgender care.
Kane: How does that compare to the literature for other conditions like cancer, COPD (chronic obstructive pulmonary disease), or heart disease? Do you have a sense of how it compares?
Chedid: We have a sense from one of the studies from Ontario, Canada that showed that transgender people were significantly more likely to have asthma, COPD, diabetes, or HIV compared to the general population control groups, but not Crohn's disease or ulcerative colitis. The prevalence was around 0.5% in the transgender individuals and 0.6% in the control group. But again, mind you, the study had small numbers for IBD cases to make such conclusions. But it's all we have right now.
Kane: Wow. I know you've been working in the area of netnography. Is that how you pronounce it?
Kane: Tell me what's going on there.
Chedid: It's an interesting approach or an interesting methodology that we use. It's a qualitative type of study. It's ethnography but using online forums where people go in and post their opinions about a certain topic. We surveyed all these forums and extracted common themes that people are posting about. We were interested in looking at what people are posting about anal-receptive intercourse and individuals who have received ileoanal pouch anastomosis surgery. This is where folks who have severe ulcerative colitis or who have dysplasia and ulcerative colitis required a colectomy and ended up with a J pouch. We don't know and we don't have any guidance or any recommendations on whether or not it is safe to have anal-receptive intercourse in individuals who have a J pouch, and we don't know how to counsel our patients about this. So, we were looking at these online forums to see what patients are posting. We have submitted this abstract, and it's currently being reviewed. We identified certain themes, predominantly that individuals don't know what to do. Their doctors aren't counseling them about anal-receptive intercourse in clinic after they receive an ileoanal pouch, so they don't know what to do. They're seeking out the online forums to counsel each other on individual experiences. Based on that netnography review we did, we know that patients raised concerns for risk of pouch rupture if they engaged in anal-receptive intercourse. They were wondering if the pouch was stapled at the anastomosis. Another concern was the potential for anal strictures that could prevent them from engaging in anal-receptive intercourse. And another concern was differences between the ileal compliance vs rectal compliance. These concerns are all brought forward by individuals on online forums.
Kane: So, it's sort of like turning to "Dr Google" because we are not talking to them about this.
Chedid: Absolutely. Because as you also know, at the same time, we did a prospective survey of our physicians all over Mayo Clinic — not just in Rochester but all over our enterprise. And we identified that our doctors are typically not very comfortable asking these questions or counseling patients regarding anal-receptive intercourse if they received a J pouch. It all depended on whether you've talked to a surgeon vs if you talk to an IBD provider vs if you talked to a general provider who doesn't see IBD patients. The comfort level changed. But again, we don't know how to counsel our patients because we haven't systematically studied that.
Kane: What it sounds like is that our agenda should be to study patients who are out there already so we can share the prevalence and the incidence, and figure out the burning questions and the concerns of this population. And then what?
Chedid: First of all, we need to do better in clinic in order to make sure our patients know we are a safe space for them, no matter where they're coming from or what their sexual orientation or gender identity is. And as you know, Gen Z identifies more and more as non-straight or non-cis. Gen Z are our upcoming clinic patients. More and more of our patients are going to be from the Gen Z population, and we have to be well versed in how to approach the sexual and gender minorities. We have to be doing better in clinic. We have to be doing systematic studies prospectively. We have to also make sure we are approaching these topics ethically, meaning that they are very sensitive topics. For any methodology we choose to use to study this marginalized population, we have to recognize that these patients usually have a history of trauma, whether it's healthcare distrust or not seeking medical care because of previous traumatizing events within the medical system. Our role is to choose the right methodology for this population, not further any stigma in our publications or in how we're studying this population, and not make these patients feel more marginalized. This is very important for us to recognize and remember.
Kane: Victor, this has been an amazing few minutes with you. I hope that whoever is listening can take away some really important points here. A few of these are that there's a difference between gender identity, sexual orientation, and gender expression, and that we need to leave our perceptions and ego at the door when taking care of these patients, particularly when they have IBD and when we are dealing with sensitive issues like the rectum. We have to do better for our patients and by our patients, and as academicians, we need to fill the literature with ethically performed research. I want to thank you for being here today. You can find out more about our IBD Pride Clinic we have created at Mayo Clinic where we are seeing patients from all the sexual and gender minorities and giving multidisciplinary care. You can find out more about it on our MayoClinic.org website.
Chedid: Thank you, Dr Kane, for having me.
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What Is a Top Surgery for Transgender People?
Surgical Treatment of Ulcerative Colitis
Assessment of Health Conditions and Health Service Use Among Transgender Patients in Canada
Receptive Anal Intercourse in Patients With Inflammatory Bowel Disease: A Clinical Review
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Cite this: PRIDE in Care: Inclusive Treatment for LGBTQIA+ Patients With Ulcerative Colitis - Medscape - Feb 22, 2023.