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Day in the Life of a Gastroenterologist (2 of 2)
Day in the Life of a Gastroenterologist (2 of 2)
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So, as promised, we're going to try to focus a lot of — some of our discussion for this session of Day in the Life of a Gastroenterologist on EOE topics, and realizing that not all of our panelists are necessarily focused on that disease state. There may be some other perspectives from their institutions or practices that they can provide. And like yesterday, please raise your hand if you have a question for the panel, and we'll be happy that we do want to make this as interactive as possible. I want to start with question number three here that we had put together. And the reason I bring this question to the forefront is that how we function in GI practices has evolved quite a bit, not just with EOE, but has evolved quite a bit over the last decade or so in terms of where GIs are versus other providers. But in terms of EOE patients in your clinical setting, who is really providing this care? Is it GIs? Is it allergists? Is it APPs? Is it primary care physicians? And how has that evolved over time? So I'll open that up for our panelists. So I've been practicing pediatric GIs since 1998. I will tell you, in 1999-2000, we were all getting all our biopsies and starting to really talk about eosinophils with our pathologists. And I was at a big center. It had Glenn Feruto as my training director. He was just really starting his lab and starting to talk about it. I think we saw it initially as probably a childhood disease. I don't think we recognized at that point that it was going to be this chronic progressive discussion. There's a famous story that Glenn can tell you all when you get him with a beer or so in his hand. He'll give you a story. I did think about your college students who are drinking beer. Is the wheat bringing out the EOE? But what you saw was the adults started saying, hmm, maybe those EOs in the esophagus are more than we had been thinking, which was basically GERD. And you really had patients who had Nissens and still had tons of EOs in their esophagus. So you sort of saw this evolution, as I said. You had the adults saying, our patients will never cut stuff out of their diets. That has not proven. We also had this very interesting discussion around the dilations. And clearly, this discussion around fibrostenosis and the wall remodeling has been a big evolution. So yes, I'm dealing with a different condition in that it's acute inflammation. It's not necessarily a chronically progressed situation with sclerosis, if you want to think of it that way. I also am dealing with very nervous parents, and their children aren't eating well. So they're looking at a tiny kid who's not gaining weight, and they want that kid to be playing hockey with his friends. And they're like, what do I do? So very different motivations for them to possibly follow my directions than the older kids. And certainly, actually, your patient who's 20 who's had it since he's six, yeah, that kid is done. He doesn't care anymore. He just wants to be eating pizza and drinking beer at college. So that's officially going to happen. So patients, it's really, they're very different patients from the little kids. Where we are now is, yeah, we want to make the diagnosis quickly. I don't think we want to do as many endoscopies as we were doing. So the six food thing and scope after every, I'm personally not a fan. And I've talked about that with many of my colleagues. I think that we do need a medicine in pediatrics. We are big IBD-ologists. I mean, these are the things we're looking for is IBD, EOE, celiac disease. That is what we're looking for. And so we're very comfortable with biologics. You guys have heard me talk about this before. But we are thrilled. And you're all telling me, oh, we still need the pediatric indication. I'm like, it's approved down to 12. That's good. That's a great start. And I think the rest of it will come. Obviously, we've been able to get it for eczema down to six months. So I mean, bottom line is it's wonderful to have biologics to be able to work with. And I think we're very excited that we've evolved to this point. And yes, you too will be doing transnasal scopes in five years. I know how to. I just can't convince anyone yet. So I will say I'm very fortunate in terms of the fact that I fell into this at the right time. And we were able to really build a large center. We have six esophagologists at Northwestern. And two of us, Dr. Rohana and myself, do EOE and run the EJ program primarily. But everyone sees EOE. As part of our clinic, we do have nurse practitioners. We have GI health psychologists. We have a dedicated dietitian who I helped train when we first started that diet therapy. And she trained with the pediatric dietitian at Lurie Children's who was doing all the food elimination studies. So we've been really fortunate to have her on the team. And we do have our allergists who work closely with us as well. So it's been a really lovely kind of multidisciplinary team. And we work very closely with our Lurie colleagues, both on research and clinic. And we're working to build a transition clinic. As Dr. Lightdale had alluded to, it's really tough when these kids kind of transition from peds to the adult world. And they get lost somewhere in the college space. And then they come back with food impactions. So trying to bridge that gap is going to be really important. But I've been very lucky to be at the center that I'm at. That's another thing that's been a great model from IBD to borrow from is that transition of care from the pediatric to the adult world. And really optimizing that so they don't get lost to follow-up is really very critical. Any other comments from the group about involved? I mean, Northwestern is really a very large center that's focused on UE. So those kind of team-based approaches in one center may not always be available in the community. Any other comments from the group in terms of the role of allergists or just APPs in general in the practice of GI? So I think it really depends on where you are. And at many academic centers, I will say that gastroenterologists oftentimes would guide that care because we're the ones that are visualizing that esophagus. And that's a huge advantage. So we see that endoscopic healing. We're not just relying on that pathology report. That's not the case everywhere and in the community. Sometimes it's the allergist that's driving that care. But really, it's important to have that communication between the allergist and the gastroenterologist and the pathologist. Communication is key when you're treating that, wherever you're treating that, and whoever is treating that. And I would say the really important thing is that patient needs to have a quarterback. They need to have someone who is going to be driving this because a lot of frustration comes from patients who ultimately end up seeing us who say, oh, I was told to go here. And then I was told to go here. And then I was told to do this. And then I eliminated 50 things. And it becomes very, very hard for them. So however we can streamline that process for patients to whoever that person is going to be, whether it's an allergist, a gastroenterologist, a clinical extender, doing that better for patients is important. So I just wanted to comment as, again, someone who's kind of in a more academic community hybrid setting where we don't have all the resources and a dedicated program, that it does end up being the gastroenterologist that's seeing these patients. I think we all feel, even as a general gastroenterologist, we all feel comfortable with starting therapy. Another thing to consider is that there are much fewer allergists, particularly adult allergists. So even at another large academic center where I did my training, University of Chicago, we really only had one allergist and immunologist. And he was primarily focused on the pediatric population. So in that setting, yes, GI is going to be seeing all of those patients and managing them. And I think that's generally the expectation, most places, unless you're lucky enough to be at a dedicated center. Yeah. Can I just, like, can I? So I totally think the most important thing to understand is it's where you are that makes all the difference. So I actually, and you also need a group that's somebody in a community who believes in it. So one of the evolutions is away from directed dietary elimination. So I diagnose EOE. I do not automatically now send to my allergy colleagues, because honestly, there's no point. I don't care. I mean, sure, if I'm worried about peanut allergy. But chances are that kid has already seen the allergist. So what's happening more I'm seeing are community allergists. And it's interesting. They are not in academia, because they don't get paid. But they sure get paid when they're out there in private practice. So they're out there in private practice. They are doing their allergy testing. And I have talked at the American College of Allergy, Asthma, and Immunology. And I know the Quad AI is also interested. So the allergists are, they're learning about it. And they may pick it up. The problem is they can't diagnose it. So they need a gastroenterologist to do the diagnosis. Now you need an adult GI doc who is believing in what you guys are teaching, which, you know, so this is what you guys are up against, clearly. Because the allergist in a, I'm going to pick a state, try to pick something, nobody, you know, in Wyoming, an allergist I'll pick, you know, is going to pick, be worrying, because they're like the person. So they're going, maybe my patient has EOE. If they send to their community-friendly gastroenterologist, that gastroenterologist may not do biopsies. You know, it's like really trying to teach, everybody's teaching each other, I think. And I bet there is more bidirectionality with community allergists than we know in GI, because we're dealing with it in academic GI. Does that all make sense to you guys? That's not, yeah, okay, we're all nodding. So. Question. So one thing we see is sort of the other directionality, too, that someone will diagnose in a GI setting, EOE, and then decide this patient needs diplomab, and then they send them to an allergist to prescribe that diplomab. So other than the obvious delay in getting to the diplomab, which, like you said, there's less allergists, so it may be longer before they're actually seen in a follow-up. Is there any other implication to that? Is there any negative outcome to having allergists do the prescribing? Or are we inevitably heading toward, they'll get more comfortable with it, and eventually the GIs will be prescribing it like they do for biologics and IBD? Yeah, I mean, I can speak to that, because even our own colleagues don't prescribe diplomab. The two of us tend to. They're starting to. I think it's a comfort level with gastroenterologists. I think you need to, I think, you know, we all as clinicians need to understand the implications of biologic therapy. We need to understand very well the mechanisms. We need to understand very well the adverse events and the things to look for in these medications. They're not harmless medications. And so unless you truly understand this compound, whatever it is, that person's not going to want to prescribe it. And so I can see that if someone's not prescribing it very frequently, they would send it to someone who would be prescribing it frequently for other conditions. I think with education, gastroenterologists who see this all the time would feel very comfortable with prescribing this, but they need to understand the mechanisms. They need to understand the risks, and the risks are real. You need to review that. So it's a comfort thing and a knowledge thing. Our IBD colleagues frequently complain about the obstacles to their prescriptions for biologics and the need for prior authorization. How much of that is playing a role in sort of putting them in your lab? Huge. Enormous. Enormous amount. And I will say we're in a very unique situation because just like all of us here, we have large IBD groups who've already vetted out this process, but there's so much paperwork that goes through. We're lucky that we have a specialty pharmacy that helps us, and we have all these templates, and most of our patients are pretty severe, so it's not a hard sell to get this covered. Whereas you're thinking about a community person who's already super busy. They may not have the clinical staff. They're now faced with all this paperwork and appeals. I mean, that's a very daunting task, and probably why a lot of people don't want to put in that effort because that's extra time that's already on a very, very busy day that we're putting in. Question back here first. Okay. Here we go. I think you can hear me now. Thank you. I appreciate this. This is a really great discussion about the GI allergy and the relationship there because I do think there is a lot that's going to come, and it's an exciting time for that, but the downside is patients are getting lost in that shuffle. And I come at it from a different perspective where I've been involved with Dupilumab since 2017, so for me, even evolution with the dermatologist who, similar to your doctors that treat some of those other type 1 conditions, the autoimmune diseases, that the paperwork involved for those biologics is so different than Dupixent because you don't have to do all the bloodwork. The safety implications are not similar, so I was wondering your all's perspective there. My second, and dermatologists, it's taken a little while, they're kind of there now. My second question with that is, from an allergist's perspective, they understand type 2 as being chronic and it's not going to go away. So even doing inhaled steroids for asthma, for example, continuously does not help the majority of asthma patients. It's getting them on a biologic, and they're recognizing the importance of a biologic sooner to treat it. In talking to allergists, they're ready to treat EOE because they understand the chronic nature of it, and for me, it's been interesting the past couple days listening to you all in academia where I wonder if you all are still thinking of it as, and we had this discussion earlier, kind of treat to flare, or do we treat chronically so that we don't progress, the disease does not progress. So there are a lot of loaded things in here, but my main question is, how do you all see, or what would you like to see as far as the GI allergist discussion happening? Would you prefer allergists treat your EOE patients, or would you prefer you all hold on to them? And what are your opinions on the allergist's perspective that they do understand it's a type 2 disease and they are willing to jump on biologics sooner to treat that? I'll start. Because I was in two different hospitals in the last year, I don't know that all allergists get EOE right now. Some of them, they've heard of it, they're like, go to the gastroenterologist. So I definitely get, and this was happening in Worcester, Mass., which is 30 miles from Boston, but there was an allergy group there. They had a kid who's atopic, they're dealing with maybe even some IGE-specific food allergy, but they start thinking about EOE. They would call me up, and honestly, they weren't saying, hey, could you make this diagnosis and send this kid back to us? We'll take care of it. They were saying, please. You know? Yeah. So that was, you know, it just was one thing. So and then, bottom line is, I don't think the patients need both of us. I think it's just more a matter of both groups need to be educated on the disease. And then, yes, it's funny, again, maybe PEDS is ahead, but to feel empowered to use the right medicine. So we really are there with IBD. I am not playing around with ASAs as much. I really am going straight to biologics. There's a menu out there of biologics. You can feel that there's going to be more, I mean, it's already happening, but it's going to be, okay, I just diagnosed you with Crohn's, this is the biologic I want to start you on, and it's based on what your disease is. And I hopefully, no offense, but EOE will get there, too. We're going to have a menu of them, you know, because I don't know that it's working perfectly for everyone, which we could talk about. It's been a year since I've done this meeting. So I've now had more experience, but, you know, I think it's very, so that's, I think, what we want is everybody's comfortable with it, and everybody feels empowered, but you're also feeling we need a lot of help from the clinician side with the insurance piece. I mean, we are, I know AGA, ASGE, we're all NASPGAN, the Pediatric GI Society, we are all now in advocacy to reduce the prior authorization burden. It is getting ridiculous. So you want to talk the number one barrier, whatever your specialty is, it's that. And, you know, I don't know the answer there, but. And I would say to follow up on what you were saying and what you were asking, I mean, I agree. I think it should be one person. I think a partnership with the gastroenterologist and the allergist. In our practice, it's mostly the gastroenterologist that's driving this. And I want to, and so we feel very comfortable with prescribing biologic therapy, and we've had years of experience with the IBD space. But I want to make a comment about that chronicity. There are different therapies that affect that chronicity. It's not that you're gonna have different outcomes, or we haven't seen it yet. There hasn't been a study yet that has been done that says one therapy is gonna have better outcomes down the line than another. So I think we have to be careful when we talk like that. Yes, the biologic therapies across the board are working from a more systematic way to decrease some of those cytokines that are being revved up. But we don't know yet if that's gonna be a better choice in the long run from a fibrotic standpoint than someone who has eliminated a food for the long term. We've seen years and years worth of patients who have been very well controlled on other therapies. There's definitely a huge role for biologic therapies. There's a big need. Where it's gonna fit is still a little challenging. I think we're not yet there. They had to go through these steps with IBD in terms of starting patients on ASAs and failing that and then doing this and then getting to biologics. It's possible that we're gonna have to go through a similar hoop in some ways with these biologics in EOE. We've seen it, we're at a big center. I've already had to spend lots of time with insurance companies who have forced our hand at using other therapies and documenting that first. A lot of our patients have already done that, so it's easy, but some of them haven't. Even someone who I say, they have X, Y, and Z, I wanna start a biologic right off the bat before these other things, there has been complete denial. A pushback to say, you need to start them on X, Y, and Z, document failure, and then approval. It's just the reality of where we're at. I can share with you, I was telling Matt and Bill this yesterday, I just had a patient recently where I wrote the prescription for Dupixent. Yes, an advanced endoscopist wrote a prescription for Dupixent. And it was denied, and said, you gotta jump through this hoop, you gotta jump through this hoop, and you gotta jump through this hoop before we're gonna approve it. And one of my colleagues, Taseef Ali, he's one of my former fellows and colleagues, he was an ibediologist, has this hashtag on his social media, respect my prescription. And it's kind of gone viral, his movement in terms of advocacy for physicians and APPs to respect that prescription, that we've had a discussion, we've weighed the risks and benefits, and this is our decision to make for our patients. And we just have to get policy makers to hear that and continue to hear that from loud voices. So I wanted to go back to the chronicity issue. Nimi and Jennifer and anybody else, do you have patients asking you, you mean I gotta be on this biologic the rest of my life? What do we know 10 years from now, somebody on that? Or 20 years from now, somebody that's on that? You get those issues? Yeah, yes, that's a big question. Yeah, so, oh, this is great, Dr. Monsalves, I love this, that you've shown me all this data from these trials and blah, blah, blah, but what about the long-term risks? And we don't have that information, right? And so that is a challenge for some patients to wrap their heads around that. Yeah, and I mean, there's the risk discussion, which, again, relative to a lot of the IBD drugs, I do find it's a much easier discussion. I mean, actually, I learned that one the hard way. I'm like, I know how to, you know, give a consent or whatever, at least have a discussion around biologics. So the first time I talked all about lymphoma, it turned out I didn't need to talk about that. So, you know, I'm like learning a little bit, but the safety profile right now sounds good. I think it's more the issue of, do you have to be on it forever? Like, that's very daunting for people. So I will tell you, so this doesn't exactly help all of my adult colleagues, but I tell my patients, let's get you through college, and then you could sort of decide if you need to continue to stay on a medicine. I do this with IBD and now with EOE. So it's, you know, the goal is, you shouldn't have to worry about a food impaction because you're drinking beer and eating your pizza. So, you know, that's what I want for them. And again, a lot of them, by the time they're going off to college, they're just done and they're done with their mothers worrying about them. They're just done and they're going to eat whatever they're going to eat. So I think it's peace of mind for everyone that there's something on board that's going to keep it at bay. So, but yes, then they come off, I assume. And then I think this is where that research is really going to come into play because a lot of people will ask, well, then do I need to stay on it every week? Can I do it every other week? Can I do it once a month? And, you know, there's data on every other week and the histologic efficacy is still really good. I mean, the symptom, not so much. But, I mean, I think there are discussions that can be had as this moves forward, but really research that is very, very critical, which I'm sure is being done, but will help inform those answers. Great. Any other questions related to that? I want to go back to the APP part of our question and the role and maybe diversify the content of this discussion. A role of APPs in the practice of gastroenterology, I can tell you from my perspective, my APPs and my colleagues that are APPs in our practice are indispensable. And 10 years ago, we didn't have that access. So maybe going down the panel here, we'll start with John. What role do APPs play in your practice? Yeah, you know, the APPs have become very sophisticated in patient management. We have a number of them in a large GI practice in Mayo and Minnesota. And the esophageal practice alone has two of them. And one in particular, who's been part of the esophagus practice for a long time, literally only sees patients with esophageal disease. He sees them all day long, five days a week. He talks to people like myself who perform endoscopy and dilations on these patients every day, frequently. So I talk to Sorrell all the time. And generally what happens is on intake when there's a new patient, they'll be seen by one of the esophageal practice physicians with Sorrell, the APP, who's a nurse practitioner incidentally. Some of them are PAs, some of them are NPs. We tend to have more NPs in our practice than PAs. I don't know why. But subsequent management, particularly if a game plan, a treatment, a management plan has been formulated and there isn't any strong deviation from that plan, that expert APP is going to follow that patient longitudinally. And that patient will generally be seen by a physician only at some of those visits. And the supervision of Sorrell is as much supervision as there frankly needs to be. I mean, he sees these patients so much that I ask him questions left and right about this or that management particular. And he is also expert enough that he has lectured on the topic at ASGE courses. So I think that what's happened with APPs at least in GI practice at large referral centers is that they are focused clinicians and they are so focused that they are frankly expert clinicians. The same is true of Andrea Gossard, who's one of our hepatobiliary liver practice APPs. So she not only sees, she only sees liver patients but she tends to only see liver patients who have hepatobiliary disorders, primary biliary cirrhosis, primary sclerosing cholangitis, cholangiocarcinoma. And she knows more about that than certainly any gastroenterologist in our practice who isn't a focused hepatobiliary doctor. And she also lectures widely at the national level and has published more papers than I have in the primary literature as an associate professor of medicine. And she's an APP, she's a nurse practitioner. And she has the same academic rank in the Mayo School of Medicine that I do. So, you know, you can't make generalizations about, oh, you're a doctor, you're an APP. Those days are gone. And some of those APPs, you better bet, have more expert knowledge about their focused area of clinical practice than many gastroenterologists or hepatologists. Great point, others? So I'll say that where I'm at, you know, while the exact rules and functions of the APPs are in flux, always are, the philosophy has been that the APPs are physician extenders. And I consider that to mean that they enable us to do the work that we would like to be doing and that our hospital administrator would like us to be doing and that the patients need us to be doing that cannot be done by an APP. And primarily for gastroenterologists, that refers to procedures. So we have excellent nurse practitioners. We also happen to have more MPs than PAs, but the PAs are also great, who either work on the outpatient side of things or on the inpatient side. On the inpatient side, they're primarily helping to assist with the consult service for our interventional patients who need close care and follow-up before and after their procedures. And then on the outpatient side, each NP or PA is paired with a physician. So either they will have clinic with the physician at the same time. They'll see patients independently generally. However, if they have questions, then the physician will come in and see the patient. But regardless, we staff them or we review every case to make sure we agree with the treatment plan. And they also have their own separate clinics that tend to be for follow-up patients. They honestly, once they get up to speed, which does not take that long, they generally feel comfortable managing follow-ups for general, well, in my case, general GI complaints. But if they do have questions, they are very free to reach out to us regardless, even if we don't know the patients personally. So by doing that, that opens up our ability to be able to do more endoscopy as opposed to having more and more clinic. Because even with their help, or wait times to get in to see a gastroenterologist for four or five months. So they really just enable us to do more procedural work, which I appreciate. And I would say our model is very similar to yours in that we do have a combination of nurse practitioners. We have some PAs. We have two esophageal APPs. Right now we just have one, but we're recruiting another one. And mostly what she does is she'll see our follow-up patients and that helps to improve our access because our access is very poor in terms of waiting months and months to get in to see an esophageal provider. So we'll end up seeing all the new patients, obviously doing the procedures. And then a lot of the follow-up management can go to her. Certainly not all of the follow-up management, but some patients will go to her and then she'll see them longitudinally. And then reach out to us if she has any additional questions. And they'll always come back to see us, probably about once a year. We do review all those notes for all the patients that she does see. So it's very helpful. And I think the same model is there for our hepatologists. Our interventional team has both an inpatient and outpatient APP and general GI has several. So yes, we are definitely incorporating them into our model. Yeah, so we have advanced practice providers without a doubt. I have to tell you, there are a lot of questions that are very difficult questions. And honestly, it hasn't been the smoothest thing. But some of it is very interesting. I like this concept of the focused clinical expert APP versus the generalist who's just extending you. As you may remember from yesterday's talks, patients with GI issues come in with all the same complaints. They feel nauseous and they aren't eating very well and they have belly aches and you have to figure out what they have. And it might be cancer and it might be EOE and it might be honestly IBS. And then so getting there where you can really make that diagnosis in an efficient way is an extraordinarily complex process that requires a hell of a lot of training and fellowship and then being a junior faculty and learning the hard way or junior attending. And over time, you get very, very good at it. APPs are considerably have less training to get to that point. This is what I'm struggling with. They're really, I find it's very difficult for them to do that initial intake and do it well. And then the older they get, the more they bristle at my colleagues who are two or three years out telling them, no, I don't agree with your management. So there's definitely tensions we're running into with them as physician extenders. They especially nurse practitioners often will articulate that they went to be a nurse practitioner for autonomy. And so how does that play out in a subspecialty world? I think we're really still struggling with it. Inpatient, it works fine. There's clearly somebody supervising them. There's clearly work to do. They can kind of get the hang of what an admission and discharge and all that stuff seems to be about. But the core GI or what people call general GI clinic, yeah, not as easy. I think it's almost like shared decision making. There's like different options that you can pursue based on the pros and cons of each approach. And speaking of shared decision, I think that EOE is one of the really prototypical disease states where shared decision is so important. But there's other disease states that Dr. Gonsalves mentioned throughout GI where we make shared decisions. Where if I get a 90 year old woman who's got some comorbidities and had an upper endoscopy and my colleague in the community found an adenoma or a precancerous polyp on the ampulla and refers them to me for an ampulectomy, I really have a sit down discussion with that patient about the risks and benefits and the pros and cons of doing nothing or going through a procedure that has significant risks and may reduce the risk of cancer. So those kind of things are natural in medicine. But EOE, because of the dietary therapies you have options for, the other non-FDA approved therapies that you have, the FDA approved therapies, the endoscopic management, really does require a lot of sit down time and dedicated time to review all those options. And I wonder how much time do you think our GI docs in the community have to sit down and do that thoroughly and have our patients, as Jennifer said yesterday, demystify all the options for them to make that shared decision? What do you guys think? Is that happening in the community? I don't think any of us have that much time, you know, to really truly educate our patients. So we're always running behind, we're always running late, and that's probably even amplified in the community setting. But that's where, like, patient resources are really important. So every patient that comes to see us gets a new patient packet, and there are all sorts of selected papers that we've chosen for them, high yield, that are very reasonable to read. We've done patient-focused language resources in there. We've given them patient advocacy resources for the different patient advocacy groups. So additional resources, as many resources as we can provide, are really important for those patients. So in the community setting, yes, if you had a quick packet and handouts for those patients to read through all the things that you've thrown at them in that one meeting, that's really, really helpful. It could be a role for an APP, for sure, so yeah, part of the discussion. Even in the community, they're on the outpatient side, they're often incredibly well-trained RNs, even. So the RNs that are manning our phones at Gottlieb Hospital or Community Hospital are fantastic, and they have a good understanding of, you know, the basics of the conditions we tend to treat, and oftentimes, our RNs are fielding questions, complicated questions, and sometimes they'll forward them to us, but that also helps a lot, too. Great. Question? LaShawnda? So my question is, so how often do you have patients that say, so you've told me what I have. Am I going to die from this? Can I live with this? How urgent is it for me to do, you know, these treatments or therapies that you're recommending? Can I live my life without doing this? How do you explain that to them to help them understand what potentially could happen, you know, for their lives, even though it's not life-threatening, but it is life-altering? And you know, that might be some of the apprehension for them to do or move in a more urgent way. I can answer it from the adult standpoint. I think Dr. Lightdale probably will have a different kind of spin from the pediatric standpoint, but what I will tell them is that, you know, thankfully, with 20-plus years' worth of data, there hasn't been any association with malignancy and these eosinophilic disorders. That's really great, but what there has been is many studies that show that if we don't treat this, that esophagus is likely to get scarred down, get more narrow, have more strictures, and you can get food impactions. And you know, I'll describe to them what that means if they haven't already had one, which typically they have. And in those settings, there's a higher risk of complications of tearing that esophagus and having bad outcomes, even with dilations. I mean, we talked to them about the perforation risk. So if that scar tissue develops over time, it may require more dilations than less. So it's best if we can get that esophagus to be a little bit more stretchy earlier on instead of continuing to become a more rigid tube, which is going to be harder to make an impact on the longer we wait for therapy. So that's how I talk to them, that it's hopefully going to affect, in a good way, their day-to-day quality of life, and that they're not going to be as fearful of swallowing or have those bad outcomes of the food impaction. I'm curious as to how you... Yeah, no. So we... I use a very similar word. I think the word scar and the concept that the esophagus is scarring, that does seem to resonate with patients. I get referred little kids who aren't growing. So that's really where you start most of it, is they're not eating very well. They're not growing. And so anyone out there who has a child who is just sitting there and isn't eating very well, those parents are very worried. And you figure out, oh, look, you also have asthma and you've got some food allergies and I'm thinking about EOE. I will tell you, there, the tricky thing is I meet them for the first time and talking about endoscopy at that very first visit, sometimes they're not ready for that. So that's a little bit of... Some patients aren't. They are... Even though you're like, okay, this kid's going to have EOE for different reasons, you'll be sure of it. But once we get them over that hump, now it's like, okay, I can help your child feel better. I can help them eat better. They're going to grow. So the parents, everybody gets to see that. I'm going to have you restrict milk. I'll talk about that when I talk about PEDS, I really focus on the dairy. And then, like I said, I think the biggest thing we deal with is then those kids grow up and now once they hit seventh grade, eighth grade, ninth grade, they are the ones deciding whether or not they're going to follow the diet. They do not. And they're done with it. And by the way, now they're adult size, so they're no longer as excited. That growth issue is no longer the concern. And yeah, and so how do you keep them motivated? It's that word, scar. I'm worried about your esophagus scarring, so. Yeah, and I think the food impaction, having a food impaction is very motivating for patients. It's scary. And they're scared, and rightly so. And then they go through an endoscopy, and oftentimes there's discomfort after that because that food has been sitting in there for a long time. And sometimes that motivates people to want to be more aggressive with their therapy. Question? So one of the things we hear from folks in academia and in the community is that EOE is a disease that burns out, that there may be left fibrotic changes, but there's a perception I've heard from several people that they think this is a disease that will ultimately burn itself out. And you may have residual scarring, but otherwise it's not going to continue. So one thing I wanted to ask of the panel is, obviously a lot of people don't agree with that, but is there some truth to that? And then also, is there a time in which you could say that if you've reached, say, 40 with EOE and you've never had a food impaction, that you'd be unlikely to have a food impaction? Is there a time when you say, OK, you've probably reached the max effect you're going to get of this disease? So I will start to say that the concept of burned out EOE is not so much that the EOE goes away. And there are good studies in pediatrics from Children's Hospital of Philadelphia that say that less than 10% of children outgrow their EOE. Same for adults. What that burned out concept is that esophagus is so stiff and fibrotic is that those eosinophils just aren't there. They're in deeper layers of that esophagus. So it's not that the EOE has gone away. I would say in our adult experience, very few people actually resolve their EOE completely to the point where they're off therapy. We can definitely de-escalate their therapy. And once they've gone through a series of dilations to open up that esophagus, that esophagus remodels really nicely with therapy, whatever therapy that is. And surveillance endoscopies, which we've done every three to five years or so, shows that their esophagus is beautiful. It's not because they don't have EOE. It's just because they're really well treated and their EOE is under control. So yes, there are some people that might not need therapy and may, quote unquote, grow out of it. But I would say it's less than 10%. I'm wondering if we've inadvertently given you a problem by using that concept of burned out. Actually, for me, it reminds me of another term we were using with EOE, which was the tug sign. Has anyone used that? Okay. So the tug sign is you're trying to biopsy a fibrotic esophagus and you have to literally, you're like pulling that. I mean, it's really almost like a two, it takes two hands to do it, to get the biopsy. So then I once made the mistake of walking out and saying to the family, I think it's EOE. I had the tug sign. So this family is like Googling tug sign. They're like, what the hell is this tug sign? And I'm like, okay, maybe I shouldn't have said that. So clearly, we may have created a problem using that concept of burnout and it implies that the disease burns out. But that's sort of, yeah, we can- Right. So I think that maybe better education on our part in terms of what that burned out EOE actually means. But it came from burned out IBD and where there was still very severe IBD, but it was strictured and scarred and that's why they called it burned out EOE, I mean, burned out IBD. Same is true for that, quote unquote, burned out EOE. These are severe patients. They're so rigid and narrow. And that's why this burned out like kind of bland mucosa, but it doesn't mean that they're on the mild spectrum. They're actually on the severe spectrum. What about the second question? Is there a point in which you would say you've reached the max effect of what you could expect from your disease? So there are some people that, again, the esophagus is a beautiful organ and one of the things that does well is it does remodel. Like it can soften up if you kind of impact it at the right time. So yes, there's a point I would say or describe to a patient that you've been well-controlled for years. Like we've done a couple of endoscopies a year apart now, we're at like three years and five years. Chances are, if you continue to stay avoiding whatever you're avoiding or on this medication, you're going to do well. This is not just going to go off the rails and get worse. I don't know if that's answering what you're asking. It does a little. Also, just like speaking about, we talked about poop bowls and patches like the... Oh, yeah. ...esophagus. That's in stage, if you will. But is it truly in stage or there are other implications? Or can someone say, you know, I'm 40 or 45 years old, I've been dealing with this, I've never... I have pictures, but I chew well and I've never had a food impaction, so therefore, I'm not going to treat it because this is as bad as it's going to get. So the people... Yeah. Okay. I've been in the ER so much with food impactions, but the problem with that is that when there are people that have the strictures, the patients are really good at knowing what to do about getting around these strictures until they're not. And when that happens is when they're out, they're eating, they're having cocktails, and they're forgetting all their compensatory behaviors. And then they come into the ER. So someone who's had strictures, who's had a rigid esophagus that's that narrow, they've just been really lucky and been able to compensate for that. Doesn't mean they're not going to get a food impaction. It's just a matter of when. Okay. Devin. There's a lot of push towards reversing the fibrostenotic or fibrotic disease in other organs from liver disease to lung disease. The focus is really, can we go back to some degree of normalcy? Can we reverse the disease? Do you see that path with EOE? Yeah. Yeah. Oh, I think that's got to be a critical question. I mean, to your point, like the NAFLD, you know, I think we really, even cirrhosis at this point, I'm like, well, we can still do something about this. I just need you to work on losing weight and, you know, things like that. So it really, you can reverse fibrostenosis is what we're learning with the liver. And I think the other question would be if we can keep the fibrostenosis at bay for long enough, would we potentially change something? Again, you're playing with the immune system, so you know, you may actually change the immune system over time. I don't know if you guys are sitting on that data, but, you know, it's like, yeah, I suspect. So absolutely, you can reverse that fibrosis. And we've seen that in old diet studies, old topical corticosteroid studies, I'm sure you'll see it in new biologic studies, and that the fibrosis reverses and it stays low. You've seen that in transcriptomic studies where the fibrotic genes decrease and it stays low. Endoscopy, those strictures and the esophageal diameter improves and endoflip data, which looks at compliance, has shown both medical and dietary therapy can improve that compliance, which is medication, which is another marker of fibrosis. So all of that, it's very reversible. It's very reversible if you can get it at the right phase. And so that's why we always talk about, like, the critical time, right, to impact on this disease. Hence, my question regarding, earlier question regarding when to make that decision to top down approach or early aggressive treatment to prevent disease sequelae and preventing universal changes. I mean, I will tell you that, for me, what's, I mean, you talk about evolutions over 25 years of doing something. So IBD used to be a terrible diagnosis to have to give a child. At this point, I will figure out what medicine, we'll keep it at bay. I'm good at giving big doses. It's a little scary. You can sort of get used to it and, you know, and then they do well. They don't come into the hospital. They go through school. EOE's been the trickier disease. That's the one that, like, just keeps coming back and, you know, you try to get them better. I mean, and it's hard. It's hard to get them perfect. But I think, hopefully, we can get there. And I, again, I think in PEDS, you're going to see us saying, wow, great, this is a disease we can get under control. What happens when they're adults, I don't know, you know, if there's a difference there. But, um. And, you know, there's a lot of good questions in your question, right? So someone who's in the inflammatory phenotype, certain therapies may be perfect and long-term prevent fibrosis and be all that they need. Someone who's more in the fibrotic spectrum, when they're initially presenting, may need more systemic therapy that's going to have a better outcome. These are the studies that need to be done. Okay. Julie, one last question. No. Good. Thanks. Coming back to the NPPA, given their increasing roles and the fact that they are very much in touch with the patients before and after for the follow-up, do you see a specific need in terms of education for them? Because their profile is different, of course, from the GI, the PGI, their background is different also. So do you see a specific need to bring differentiated education materials or anything else? Go ahead. I think it may be more practical education. It's interesting. I wouldn't count on my APPs. Some of them are wonderful, but I'm trying to think of anyone really. Again, I like this idea of trying to differentiate, because some are incredibly great, and those are those focused clinical experts. So maybe that's the mission, is how do you take a core GI APP and make them into a focused clinical expert around EOE so they can, I'll use my own word, demystify EOE for the patients, explain, frankly, I really appreciated all the immune discussion, because I thought that was such a nice summary of all the pieces of the immune system we're now understanding around this condition. You think about how much we really understand now. And so that's what, I don't know that patients need it in that level, but you want your APP to get to that level so that they can help the patient understand the immune system. Yeah, and I think it really just depends on the practice and their role, right, in terms of that education. I think education is always great to be able to help understand this disease process, but it really depends on the role at whatever center or community practice they're at. And if they're going to be the ones that would prescribe Dupixan at our center, they're not. So it's just a matter of where they are practicing and what kind of resources you can provide to them. But I think education about these disorders, this disease, the atopic condition, the immunology is really important. I think, you know, some of them are, they tend to self-select. They're like anybody else. If they have the fire in them and they have the motor and they want to be experts and really want to understand the disease, they tend to select to go places where the role sort of fosters that or maybe even requires it. Whereas if they want to punch the clock and be done and, you know, when they're not at work they're checked out, then they tend to seek out practices where they can do that. I think it's the former where resources like you're talking about, Julie, could be useful. And so it would be, if you're going to do that, it's appreciated very much. But so that you don't waste your time, effort, and resources, you're going to want to filter for the ones that are choosing to be at practices where having a motor and having a fire burning in you is appreciated, fostered, or required. It's really a good opportunity for us to plug the ASGE APP course that is planned for November 17th on EOE that is going to be sponsored in part by Sanofi Regeneron. And the goal is just that, to really raise the awareness and educate APPs on the disease state and give them the tools they need to optimally treat patients. So we are at the, a little bit past the lunch hour, so we've gone a little bit over. I want to thank our panel for a very great discussion and thank the audience for some great questions.
Video Summary
The video discussion focuses on the topic of Eosinophilic Esophagitis (EOE) and the roles of various healthcare professionals in managing the disease. The panel of gastroenterologists discusses the evolution of EOE treatment over time, including the involvement of different specialists such as allergists, primary care physicians, and APPs (Advanced Practice Providers). They explore the challenges faced in diagnosing and treating EOE, including the need for effective communication and collaboration between healthcare professionals. The panel also discusses the importance of patient education and shared decision-making, particularly in managing chronic conditions like EOE. The video concludes with a discussion on the potential for reversing fibrotic changes in EOE and the need for further research in the field. <br /><br />Credits: The video discussion is not credited to any specific source or speaker.
Asset Subtitle
William M. Tierney, MD, FASGE and All Faculty
Keywords
Eosinophilic Esophagitis
EOE
healthcare professionals
evolution of EOE treatment
diagnosing EOE
treating EOE
communication
collaboration
patient education
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