2024-03-20 06 Panel 4 Managing Dysphagia in the Absence of Large Teams – Dysphagia Clinic Models

>> Hola, hello. Thank you for having us. Join you in Chile and for having the dysphagia program. Today we are very passionate about dysphagia, so we will talk about that until lunchtime. I’m Dr. Emily DeBoer. I’m a pulmonologist at Children’s Hospital Colorado. As you’ve heard some of the members of our group today, I’m very privileged to be the medical director of the aerodigestive program in Colorado and our very large dysphagia program. And I’m joined by a fabulous group of panelists. Dr. Emi Moreno is the ENT, Universidad Sao Paulo and the chief of phoneyatrics there. Anita Deshpande is from Emory University and Children’s Healthcare of Atlanta and is the ENT in their aerodigestive program and their dysphagia programs. Adana Williams is the medical director of the aerodigestive program and the feeding program at University of Arizona and Phoenix Children’s. And finally, Arwen Jackson is the speech language pathologist who I work with every day at Children’s Hospital Colorado. So as you’ve heard this morning, some of the things we’re going to highlight is that you don’t need a whole aerodigestive program to see everyone that has dysphagia. But if you build an aerodigestive program, you will get a lot of patients and you might not have the resources for everyone in your aerodigestive program to see some of the patients. So that is how some of the dysphagia programs started because we had the privilege of a very large aerial program at our institution. And then we needed to get smaller so we could service all the patients and they had better access. The alternative is you can start with a dysphagia program if you don’t have all the resources for a full aero team. And so we’ll talk about both of those models. Dysphagia is difficulty swallowing and I love this quote from the World Journal of Pediatrics from 2022. Dysphagia is a term that may be sufficient to describe the disorder in adults, but dysphagia in children is so much more. Swallowing is a basic function of life from even before birth through infancy and early childhood. Swallowing is variable and a continuously evolving process. So you really need pediatricians and people who specialize in pediatric dysphagia. Most of our patients with dysphagia who come through the dysphagia program and not aero digestive are outpatients and generally healthy. The other reason why we have a very large dysphagia program is because dysphagia is very common, although it is difficult to predict without an instrumental assessment as we just heard. In a large US population survey, about 1% in the general pediatric population in 2012. There’s very limited worldwide data and there’s limited worldwide practices. So today is day one of our journey together to solve some of these problems. As we’ve heard, it’s much higher in certain diagnoses, children with Down syndrome, children with 22q11. It’s about 10% in babies born premature, up to 25% in babies born very preterm. And 50% or more of children diagnosed with cerebral palsy, children with structural abnormalities are much higher risk. And these patients may be seen through your aero program if you have that available. Now even if you’re in a dysphagia program specific, I still think that working with team members is helpful for many reasons. So here is an example of an eight month old who was referred for a video fluoroscopic swallow study by their primary care physician for coughing with feeds. And the VFSS was not pass/fail. It revealed oropharyngeal dysphagia with multiple swallows with deep laryngeal penetration and some of those swallows with silent aspiration and the pattern improved with liquids thickened to ITC2. The child was referred to fill in your specialty here. This patient could have gone to many of us. The parents and family want to know why is this happening, how long will this be a problem, and what are you going to do? And I don’t like to answer those questions by myself, hence I have a whole team around me to help me support the family on this journey. We heard this morning about the aero digestive mindset, about the elephant with the blind men and this I have learned from Dr. Corey Daines in Tucson that it’s the difference of learning versus knowing. We’re learning how to care for this patient by listening to the family and by finding your people. So the SLP who’s going to call you with the results of the fees or the VFSS to get your opinion to decide what to do, the GI doc who wants to know what dose of azithromycin do you want to use, how am I going to think about this, the ENT who wants to invite you to the OR with them. That’s how you start to find your people until you have a full aero team. And the philosophy of the dysphagia management program at Children’s Hospital Colorado is that dysphagia is not typically a diagnosis that can be cured in one visit. Dysphasia requires management and our goal is to provide access to an interdisciplinary team ready to support families caring for their children with dysphagia. So this is one slide that says pulmonary is the most important system because our goal is lifelong lung health, not just right now. But our patients do show up with acute wheeze, coughing, RSV, flu, they have it and they need our help right away. We need to think about asthma, airway, Malaysia, etc. We need to balance that with quality of life to try and limit oral aversion, prioritize meal time, limit missed school and work. If I wanted everyone’s lung health perfect, maybe I wouldn’t feed them by mouth, although I think that’s an excellent debate we can have later. But our goal is to prevent chronic complications. So dysphagia with aspiration can cause chronic bronchitis and bronchiolitis. This can cause pneumonia, airway obstruction, impaired mucus clearance, and bronchiectasis and bronchialectasis. So this is what we’re thinking about in our program. Do they need inhaled steroids? Do they need ventilation? Do they need azithromycin and other antibiotics? Okay so here’s our child. At Children’s Hospital Colorado we score using the childhood dysphagia management scale. The patient got medium impact. That’s how they got referred to our dysphagia program, which is managed by pulmonary and SLP and dietitian. The patient had been started on ITC2 liquids but was still… Thank you. Excellent. But was still having some coughing or coughing was improved but was having eye watering with feeds and still had prolonged cough whenever they got a virus. So I didn’t tell you this patient was born at 30 weeks. We think that it’s neurodevelopmental cause. In our program we do offer scopes for patients in this middle range category medium impact with persistent dysphagia around 12 months of age. But they can come to our program and we can get them started. It’s their in into the multidisciplinary. I tell the family this child will likely improve over time. The speech language pathologist is gonna help evaluate developmental milestones. How are we gonna advance your feeds to get what are your goals and how are we gonna get there? We’re gonna ITZY testing clinic. The patient was recommended to have ITZY2 testing and they were doing much thinner liquid despite their education at the time of their swallow study. So when we re-educated and looked at their liquid and thickened, now we hope their symptoms will go away. We started an inhaled steroid cause that’s what we do. We developed a feeding plan and made sure they were coming back. So I’m gonna transition to Emmy Moreno with these words. Insulin-A dysphagia management is more than seeing the patient. It’s about thinking long term, improving our outcomes through innovation, practicing a top of scope and partnering with not only our patients and families, our whole team to learn how to do better. Thanks. [applause] >> Can I have my slide please? Good afternoon everybody. I’d like to thank the Aerodigest Society, the impact for the invitation. In fact, I hope that I represent everybody in Santiago there in the slide. And we are for the, and I feel humbled because today, this morning, we had so many lectures on the nuts and bolts on how to build a higher digestive team and also some specialized and deep on how they manage it all through these years. And I feel humbled because I am going to talk about the settings without an AD program. But before that, I’d like to give us a little bit background about Brazil. Brazil is a huge country. In fact, it’s 11 times bigger than Chile. And it’s almost the size of U.S. And also the one almost the same size of the whole continental Europe. And in terms of population, we have a high population, but in terms of doctor, medical doctor distribution in Brazil, according to the Federal Medical Council, we’re not that bad. 2.5 per 1,000 inhabitants. But if you look closely to this, you see that the distribution is more on the southeast and the south of the country. The area almost white is Amazonia where you have to–the difficulty–okay. The difficulty is because the distance from the main cities, the access, sometimes we have to go with rivers to the cities and the disparity about all the resource because in Brazil, 70% of the population relies on public health system which is unified system. So I feel that we have 10 times more issues than all these countries altogether. The hospital resources, the first point, we are–we just heard before this about the video fluoroscopy and it’s a personal inquire before coming here, I call several friends, speech language pathologists and ENTs and friends who do a visual fluoroscopy. And I found out that we have around 40 machines used for pediatric visual fluoroscopy. So it’s not very accessible. And if you see closely here, almost half of these 40 are located in Sao Paulo City where I’m from. So the distribution is really, really bad which might be close to Argentina. We just heard today–heard now about that. So distributions–so when we–therefore, our evaluations mainly on clinical assessment and using fees. Almost all ENT doctors have their own endoscopy, fiberoptic endoscopy, the usual tool and they are available in the hospitals so are basically on this. And when we decide to get to the three, four, five, six or they all are listed there, we have to really brainstorm with other friends. So in fact, we just saw the distribution. In Brazil now, we have only three teams, our digestive groups, programs or teams and they are located on the three cities and if you have questions on how they overcome all the hurdles to have this aerodigest team, please feel free. Claudia, Rebecca, Sara Mira, I haven’t seen her today but she’s probably here. And then you can ask them. And no wonder they build this–they have the team because they are doing airway surgery. However, it doesn’t mean–and so they have all this–the airway surgery afterwards, you have dysphagia for sure. So before they discharge, you have to do something for they go home. So that’s–I think that this is one of the reasons. But the main part of the dysphagia dealing is so without the team, but it’s not that bad because we have the clinical assessment and I was happy to listen to Dr. Torres, the pulmonology and as an ENT or Phoniatrics, we really do a very deep clinical assessment asking almost everything about just not only voice, the sounds and go through a very deep on neurocranial nerves and we go through all these details in the clinical assessment and then we use fees. And then we discuss a lot with our speech language pathologist and with the pediatricians and then we decide for–we choose which exam we are going to do. And in my experience, we are almost not able to do the triscope as mentioned for here. We mainly pair more with the pulmonologist to the bronchoscopy and the–our–we go to the surgical room to the laryngoscopy. So that’s the reality of the hospitalized patients. And the communication tool has been what’s up. So that’s how we communicate and it has been easy. However, if you have any good advice on being more secure in terms of data, please let us know there in Brazil because we generally use WhatsApp. But then there is a demanding issue which is really unsolved and that’s the big issue is because we–I talked about the hospitalized patients but then we have the outpatients. Their–the those are at home and this–they don’t have the access and then they have all these problems of going to so many doctors and not having this solved. But then even worse, may not–there are some–even those who are–may not even aware that they have dysphasia for the symptoms. So I’m just going through a little bit about this. I think that swallowing dysphasia is–we would like to have a precise medicine but I feel like it’s non-precise medicine. And one of the problems is that when we are talking about peds–pediatric is we have this constant different changes in the shape. And we are talking most of the surgery about the shapes but the shapes we have to adapt to the new shape and maybe we are forgetting a little bit on this point of the functional point of view. And also that we are using muscle hydrostat mechanism for moving all these muscles and that are talked in other areas like sleep apnea, sleep–the sleep studies or voice studies. Like for instance, different phonation of this airway is like I’m talking like the dark green and then suddenly we are talking about like squeezed voice and then like raised voice. That’s are the three different shapes that you see here in different views. And the third is that that was mentioned today too is that we are dealing with kids that have brains and the brains that really matters. I’m sorry people, not pulmonary, not just the airway but the brain. And in fact, there’s the brain development in terms of language and all the cognition happens in the first few years in the synapse in seven years. We cannot forget the quality of life in such a situation. And just remind us, I think everybody is familiar with that but then you see the larynx and oh, the larynx in here, all of that is so represented in motor and somatosensory. So we are really need this. Well it’s a rush but that’s my message for today. Thank you. [ Applause ] >> Hi, my name is Anita Deshpande. I’m from Children’s Healthcare of Atlanta and Emory University. I have no disclosures. So Chowa loves a multidisciplinary program and we have several. One that our children who are initially are NICU graduates will go to is called the combined trach dependent clinic. So this is for children who are both trach and vent dependent. There they are seen in combination with the ENT, pulmonologist, respiratory therapist, a nurse and a social worker. Once they’re no longer ventilator dependent, they become enrolled in our air digestive clinic, which is our biggest multidisciplinary clinic. There they see ENT, pulmonary, GI, social work, a speech therapist, dietician, a nurse and an RT. If anyone needs any sort of airway reconstruction, this is where their medical home will be. Following that, if they continue to have feeding difficulties, they are seen in our dysphagia management clinic. This is our newest multidisciplinary clinic. It’s about five years old and it was grown out of a need to create a fees clinic in our system. Our Marcus Autism Center has about a 15 or 20 year old program called the intensive multidisciplinary feeding program, which is a program where children most commonly with autism or ARFID will go for six weeks every single day for intensive feeding treatment. They’re seen by a GI doctor, a behavioral psychologist, dietician, social worker and a speech pathologist. In our dysphagia management clinic, we have that every Friday, they’re seen by ENT, GI, dietician and a speech therapist. As ENTs, we see patients with dysphagia from pediatrics all the way through adulthood. Primarily practicing with the pediatric population, there’s a couple differences in how we think about these patients from an ENT perspective. In adults, most cases of dysphagia tend to be acquired. They can result from stroke, traumatic brain injury, Parkinson’s disease, ALS or head and neck cancer. In treatment, we think of more of a rehabilitative approach. So strategies to restore or maintain their lost function. In children, most cases do tend to be congenital, resulting from genetic syndromes, prematurity, hypotonia, structural abnormalities such as cleft lip and palate, laryngomalacia or laryngeal cleft. And here’s more about habilitation. How do we practice and help these children achieve foundational skills, such as using different utensils, learning how to chew, closing lips around the spoon and so on? One of the things that I love most as being part of a multidisciplinary program is the opportunity to do a FEAS or functional endoscopic evaluation of swallowing. I know we’ve heard this multiple times today, but this is a complementary to video fluoroscopic swallow study. It should not take the place of it. At our institution, we have an ENT and a speech therapist working together with the patient and the caregiver fully involved. Most patients who do come to our DMC program will undergo a FEAS. One of the benefits from an ENT standpoint is that this is a very portable procedure. We can do this in our outpatient clinic space and also at the bedside, whether a child’s inpatient on the general pediatrics floor or in the NICU or cardiac ICU. There’s no radiation, so we can repeat it. From our standpoint, it’s very helpful because we can show the caregivers the anatomy from the nose to the larynx. This helps us guide procedural decision making and allows us to better counsel our families. It is safe and effective in children with congenital heart disease as well, and it can be performed in breastfeeding infants. Here’s an interesting table. This is how one of my mentors taught me to interpret a FEAS and then think about possible interventions. If we’re seeing nasopharyngeal regurgitation, interventions to consider can include a lingual frenotomy or tonsillectomy if the tonsils are enlarged. Rejection of liquid over the tip of the epiglottis can be seen with impaired epiglottic inversion, and in these cases, we can do a limited superglottoplasty where we release the AE folds. With intra-retinoid penetration, we can consider a cleft injection or repair. With significant residue, that makes you think of potential tone issues, and for these kids, we’ll often recommend feeding therapy and MRI and potentially a lingual frenulectomy. Sometimes with laryngomalacia, you can have a lot of a retinoid mucosal redundancy that drags this fluid into the glottis, and in these cases, a superglottoplasty can be very helpful. In some kids, they can have delayed initiation, timing issues, and again, therapy, thickening, and pacing can be good strategies. We have a very busy cardiac program, so we do see a fair number of children with vocal fold motion impairment following cardiac surgery. In these children, we will also offer vocal fold injection. Let’s see what this plays. Can you play this video? Okay. So this is a child who’s undergoing a fees. Normally, we have the parent or caregiver hold the child in their lap, and the ENT will first pass the scope. I like to take a look down both sides of the nose just to ensure there’s no choanal atresia and be able to get a good look at the soft palate. Often the children do cry. So here we want to kind of hover right above the larynx. I like to take a look at the tonsils, the vallecula, and then get a good look at the epiglottic shape and inversion. So the items that we give them to test are dyed with green food coloring. This is just standard bought at the grocery store. So a lot of this child’s swallows were okay, but intermittently, he did have fluid kind of coming down over that short AE fold and then entering the larynx through the interretinoid area. So this child underwent a supraglottoplasty to release the AE folds and an injection augmentation. This is a different child but with a similar picture. He would undergone an injection, had significant clinical benefit, and had significant and very obvious decline in swallow function with return in symptoms after that injection worn off. So we did do a formal repair. There are various ways, and this is pretty much surgeon dependent on how to do this, either with cold steel or CO2 laser. Can you play this video? I’m not sure why that one’s… This is what it should have looked like. So you can see this child has giant tonsils, and this was affecting the timing of the swallow because everything they were swallowing would just get stuck at this tonsillar level. This child ultimately underwent a tonsillectomy with improvement in their swallow function. I’d just like to thank my DMC team. I’ve been a part of our aerodigestive program since starting at CHOA and then DMC for the past year, and it has been really a great learning experience. And being able to do fees especially, I feel like has been one of the greatest drivers in how I’ve thought about how to manage these children. Thank you to the society, Matt, and the rest of the leadership for inviting us to share the aerodigestive story at Phoenix Children’s Hospital. It was so much fun working in this panel and realizing how the aerodigestive mindset has helped us in building our teams and doing the work that we do. So I will spend a moment and share our experience. And hopefully we can go from this is not just a GI, this is not just an ENT problem, but really evaluating the phenotype of the child and the family that we are seeing. So this is back in 2012 where everybody’s looking at different parts of the elephant, and it was very hard to find that blue zone because of lack of communication or just difficulties. By 2018, there was higher recognition when it came to dysphasia, persistent dysphasia. We definitely were seeing a lot of patients that were either misdiagnosed previously or that had the right diagnosis finally and realized that there’s multiple factors that go into the etiology and the treatment became very challenging because we realized we really have to look at everything and how do we put it all together. So my typo here because I thought the first aerodigestive meeting was in 2013, but it was 20 — I’m sorry, in 2012, but it was 2013, and that’s where we were inspired. In a system where we did not have an ENT department, so one of the champions in the community who had trained with Mark Rutter and I went to the conference, and I just remember watching Mike present the laryngeal cleft repair amazing videos and thinking, “Why don’t we do that with our kids with dysphasia?” And so the conversation kind of bringing it back home and taking it from there. So at that point, the vision was to building two parts of the program, the diagnostics and the treatment, and realizing that that was our main population of patients. And then it got even more complicated, and I remember a couple of years at the quad conference, Mike again mentioning how in a panel of building aerodigestive teams of how there’s always going to be a bottleneck, and we think everything is developmental with dysphasia, but this is definitely a developmental problem of aerodigestive teams, and ours was as suggested in the — in the slides. And then we realized that, you know, building your team as you think or as it is by that point, I think 2017, 2018 is when the — Paul Bosch’s paper on — on aerodigestive teams came about, and we realized that there were multiple members missing, and certainly we did not get a registered dietician for a while. And then our system, much like what I hear here, even like acutely in South America now, did not allow — there wasn’t an actual job called coordinator. So we kind of created our own, and we worked on, well, why can’t you use an MA or a medical assistant for certain parts of the coordination and use a nurse practitioner for other parts of the coordination, and really sparing your most bottleneck resources that were the physicians in those subspecialties, and it kind of went from there. We just wanted to say that currently our overall availability of services, of multidisciplinary services is very similar to Atlanta. We have a — we have a trach vent program that’s housed in pulmonology that is a collaborative resource for us, not necessarily part of us. We have the aerodigestive team, we have an intensive feeding program that’s an outpatient five weeks program, and really targets our kids that need, want, or are ready to get off tube feeds or liquid nutrition of any kind, and then a newly developing dysphagia program that’s housed in ENT as well. So we have a lot of hopes and dreams, and we’re building that, and that’s what you will probably end up doing in your team based on your current resources. So talking about the aerodigestive mindset, we definitely see the journey, and we want to make it a journey with a family in the middle. And so at our aerodigestive evaluations, I would love to see our follow-ups being just like it was presented earlier today, a multidisciplinary team kind of following up on what all the diagnostics mean for that particular patient. In our group, I’m kind of the champion, though I’m fastly recruiting others as well. And really trying to piece out the contributors to that child’s dysphagia so that we have an understanding of what the treatment path may be, whether aerodigestive remains as a primary management tool for that particular family, or they can have a primary within the aerodigestive. I don’t think I need to convince any of you on why we need a team, but certainly this was nicely recapped in a recent paper as seen here. And certainly if you are a surgeon, we also have nice evidence that triple endoscopies definitely can help with predicting outcomes for various types of airway surgeries. And certainly once you’ve established that dysphagia disease phenotype, as I call it, in those categories of dysphagia and aspiration, chronic stridor, recurrent pneumonia, et cetera, then you can identify your goals of treatment. So I wanted to bring this up because I was intrigued, Emily, that Denver would consider or offer triple scopes in patients 12 months and above. And I hope I’m not going to get tomatoes thrown at me when I say that we are actually considering and doing it in all ages. And we have — and that decision is based on some data that I’m going to share in a minute based on this particular paper that really shows us a little bit of the pathway of what to expect, as Emily was kind of adding as one of the first three — one of three tasks that we might want to talk about in this panel today. So this particular article shows — by the Boston group shows that thin aspirations, so relatively mild aspiration can take up to eight months of feeding therapy, modifications of the diet, et cetera. And if you have a more severe dysphagia, then that can take longer. Certainly in our system, you know, sometimes one to two years, and a lot of it is dilution of that patient’s care into the system and follow through. And then as a gastroenterologist, I deal with all the constipation, the bloating, the abdominal distension, the difficulties obtaining thickeners. So all around, we need a better pathway. So our hope was that we can achieve that by being intentional in our anatomical/surgical treatment and functional treatment all at the same time in every patient with severe dysphagia and aspiration or with persistent dysphagia and aspiration. So if we consider developmental dysphagia to improve after five to six months of age, and if we have persistent dysphagia past that age is where we are coming from in offering scopes, diagnostics, and this particular protocol that was published by our group a couple of years ago, I think at about the same time as the Boston group. And then the whole idea was why are we having typically developing otherwise relatively normal kids, maybe with various types of GI or pulmonary symptoms, but certainly not severe, and why are we having them on thickeners for many, many months with all the complications? So eventually that turned into a quick pilot, and those were some other studies that were going on at the same time, but they were really affecting or treating the problem from an anatomical standpoint, the injection laryngoplasty, and we just added the thickener wing protocol to that. And certainly that showed that in more severe cases and moderate dysphagia, that protocol was able to eliminate the use of thickeners within three months in some patients and up to six months in the whole patient category, and those were all young patients below three. So eventually at this point, our group is looking at the issue of treatment of anatomy and functionality at the same time. In a prospective study, our patients that come through aero digestive will undergo the triple endoscopy. We evaluate anatomy, and we call DIN or no DIN, but we inject everyone. And then we automatically place them in our thickener wing protocol, and we’re actively analyzing this data. So we have created our own dysphagia adapted scores to be able to look at follow-up in our patients a little bit in more detail, and that’s based on the classification of DOSS dysphagia scores. And then we definitely have seen this particular group emerge. This is very preliminary. I know some of you are probably going to be the reviewers, and when all the data is in, I hope that this finding persists, which is really an interesting young group of patients that tend to have resolution of their dysphagia with thin or below thin consistency needed by the time they are done with the combination treatment. So just different facets of what our journey was like. What we’ve learned is that is what everybody here in this room knows, that the aero digestive mindset wins. And we definitely are big on trying to define the phenotype. Maybe we should use your scale and add to it a little bit, like using the other. That would be an interesting project, using the other comorbidities within each of our systems. And then definitely, if you have this interest, you can build your team. It is a break at a time. This is my building, and I just wanted to acknowledge that Claire Richardson is here, my ENT colleague, and a huge advocate of aero digestive patients. She will be teaching, I think, one of the airway courses. We are big on involving our learners in the research projects, because we’re in a system where clinical productivity is still very consistently followed. And the reason I put my husband here, other than he’s my husband and he really supports me, is because he was the first aero digestive anesthesia team member many years ago when we started this. And he absolutely believed in anesthesia as a part of the team. So I’m getting lots of ideas of how to translate it 10 years later when lots of things have changed. Thanks again. . [APPLAUSE] (audience