2024-03-20 02 The Role of Speech-Language Pathology in Aerodigestive Medicine (with some general history)

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The Aerodigestive Society, the Aerodigestive Patient, Team and Program
The Role of Speech-Language Pathology in Aerodigestive Medicine Christopher Wootten (ENT), Kara Larson (SLP)

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>> >> Hey, well, my name is Christopher Wooten. It’s a tremendous pleasure to be here today. Santiago is even more beautiful than I imagined and everybody has been so friendly. It’s really such a privilege. And it’s a privilege to present with Carl Larson. Would you like to — >> I’m equally as excited and I think as Dr. Berger said, this is a huge day for us and for the society. I’ve been on the committee for three years and didn’t realize if someone said you’ll be in Santiago, Chile presenting, I wouldn’t have believed them. And I think I should have taken Spanish and not four years of Latin back in the day. But I’m getting by. >> Two years of Latin, one year of German. None of it has helped me. Okay. Well, we’ll go ahead and get started. So if we can load the next slides. Yes. Awesome. And Carl is from Boston Children’s. I am from Vanderbilt, both from the United States. We’re going to tell you a little bit about really the kind of the history of the Aerodigestive Society, what Aerodigestive Care is all about. Understanding its tenets and it’s a broad model, it’s a model that does not look the same everywhere, it’s very scalable. We recognize that there’s a lot of culturally competent care that looks different in different locations and yet I think from an economic standpoint, from a patient-facing standpoint, it makes sense from many perspectives. And then finally we’ll talk a little bit about some better outcomes that you get through this combined multidisciplinary care model. So who in the room is a surgeon? Just a show of hands maybe. Wonderful. And many of you surgeons have been to our meetings and I would hazard that for many of you surgeons this is your first time to be exposed to an aerodigestive meeting. So it’s a great privilege really to try to argue to you why surgeons need access to aerodigestive care. I assume since this is an aerodigestive and an N-PAT meeting you are all probably airway surgeons of some sort. So we do fun stuff, right? We do interesting things. Laryngotracheal reconstruction, cricotracheal resection, extended cricotracheal resection, slide tracheoplasty for congenital stenosis, posterior tracheopexy and I have to say that the endoscopic picture on the left which is a video that does not appear to be running is from Vanderbilt. We started doing this about two years ago so we have a few of these cases. The excellent pictures on the right are from Professor Toye and his recent paper illustrating really what that looks like from the surgeon’s perspective. And we all do even stranger things, right? So there’s the canonical things that we were learning that we’re constantly having to modify and find new ways to take care of the diseases that we’ve been given. This is just sort of one example, a case that I had done recently with the hyoid reconstruction. The child was congenitally absent of a hyoid and had some graft onlays, all kinds of things. Long and short of it is we have no guarantee for success and this is a tremendously impactful thing for families who have placed so much hope in getting the trach out and getting the airway better. And frankly as you look through the literature there’s reams and reams of data and I will only present a few of them here that illustrate that even in series of work, 1,296 patients at this point in Cincinnati had had an open airway reconstructive procedure when this paper was written. They pulled out about 200 and looked at single operation success just for that one indication and yet we still see that even the best groups still had about a 15% failure rate. And this is echoed at another great center, Great Ormond Street Hospital in London where there was 108 kids who underwent reconstructive operations and 32 of those patients did not get an outcome that they deemed successful from that single operation and they went back and offered revision surgery. Again at the shove in Lausanne, you know, seeing that the cracotracheal experience, again single operation success rate I think was 19%, excuse me, failure rate was 19%. So 81% of people were immediately benefited but there is some need to revise and maybe the most interesting and in some ways the most recent paper was a four center paper looking at CHOP which originated the idea, Stanford, Denver and again Cincinnati and they found that when they combined many airway reconstructive procedures and these were all reconstructions, not resections, meaning graft based operations, no matter if you look at it from the grade of stenosis, the Meyer Cotton grade, the levels of stenosis or a combination of both, the graft really never reaches 100, right? So there is no 100% successful operation and in fact, you know, the best we do and the best scenarios still are kind of in the high 80s as a single operation success rate. So this to me is really the narrative backbone for why we do aerodigestive care and as a former Cincinnati fellow, I certainly have to point back to one of my dear mentors, Dr. Robin Cotton who in the 1970s in Toronto was looking at how to do reconstructive operations using graft expansion in a model of monkeys and then later found that we could translate this to human medicine in 1978. He had published a small series in pediatric patients demonstrating success, getting kids decannulated. By the late 1990s, over 800 of these and yet recognizing that with more and more reps, the number of successful single operations did not reach 100, that we can get better at doing surgery but we can’t always get better at managing physiology alone. And so the rationale is that we really need to start to build a team around the surgical enterprise to try to not only manage the anatomy but the physiology and that was really the birthplace of the aerodigestive center at Cincinnati Children’s Hospital. And so then I get out, right? So I do my fellowship there, I fall in love with the model and I’m in practice. Here’s me, year zero, year one, year two, year three. You know, airway care is kind of hard on you. These patients have great expectations, you pour your lives into them, you’re constantly on call and rushing back to the operating room. I realized we also need in the entire world this model. We really want the entire wisdom of the world to be able to surround these patients in a multidisciplinary, multicentric fashion. And so that was the idea that I went to my chairman with in 2012 that I would like to start a meeting called the Contemporary Management of Aerodigestive Management of Children. And that meeting was going to be held at Vanderbilt University Medical Center in Nashville. And the first meeting would be in 2013. And we had 58 people there. Mike Rudder, I think, was like, you know, going to go on about midway through the second day. At that point, we were at least a week late, you know, like we started to spend the night in that room. We were so far behind. And eventually we got through that meeting. But at the end of it, people liked it. You know, at the end of it, people, I think, recognized that unless you’re at one of these centers that has been there a very long time that has already sort of developed its techniques to surround the patient in a 360-degree fashion, we all need to see how we’re dealing with these conditions and how we can really leverage the talents of those around us, both in our institutions and across the country and across the world. And so we held a meeting again and again. Very early partner featured here in the picture right off my left ear. Jeremy Prager was right there from the beginning and wanted to host it in Denver as soon as possible. Next to him in that picture, kind of in the center of the screen in the back, is Sparrow Helen, one of the nurse coordinators there in the Denver program. I think just illustrating how at the very beginning we were not just an organization of physicians, not even just an organization of surgeons. We also desperately, deeply invest in speech pathologists, occupational therapists, all the people that were mentioned, including nurse coordinators, nurse practitioners, all sorts of people that really touch these patients. Kaylin Johnson, seen there on the far right, who’s been the longest legally serving president to two terms, which has been fantastic. Paul Besh, you all know very well, kind of in the center of the screen, second president and again, so much intellectually stimulating conversations right from the very beginning. And we have, we’re missing, unfortunately, Scott Rickert, who was unable to make this meeting and then Lenny Wilcox, who is going to be our next president. And of course, we just got to see Matt Brigger, who kicked it off as the current president. So it’s a lot of legacy right there. And this was just taken very recently. We set up some bylaws. We talked about what’s the organization going to look like. Cara. I’ll spare you from reading our bylaws, but they really do guide our practice and our growth. And so when we look at our first bylaw, we’re understanding the complex needs of our patients. And I think when we look across the continuum, we have to meet the patients where they are, meet the parents where they are. Our parents want their children eating by mouth. That may not always be possible, but we can be creative. We can work on oral feeding and supplement with two feedings. And here’s just sort of a kind of cross section of patients that I see. And this little guy in the second picture came to us from Dubai, but we really connected because we both had the same on cloud sneakers and he just came running up to me and his parents goal were they wanted him to be at the table. They wanted him to work on solid food. This little guy on the right, that is a video. I don’t know if it will play, but he has an NG tube because he aspirates thin liquids. He had his laryngeal cleft repaired, but he’s working on thickened liquids and we’re working on chewing. So just keeping up with developmental feeding skills. If you can’t eat by mouth or you can’t take liquids, developmentally, you should still be able to work on purees and work on spoon feeding and work on chewing. And that’s really meaningful to parents. I mean, the ultimate goal, right, is parents really want their children to drink water and drink thin liquids. We might not be able to do that, but this patient here is working on thickened liquids, blended with the tube and working on their chewing skills. As we’ve already said, we’re here to promote the society. We’re here to be available as mentors and I think kind of we’ve busted out of the United States, which is exciting and I think Aerodigestive, we want to go global and we want to provide mentorship opportunities. It’s been really exciting to collaborate with the SLPs here in Chile and Argentina to share ideas. I know I’m from a hospital with resources in a very busy Aerodigestive center and with that I really feel a sense of responsibility to share my knowledge and to connect with other SLPs. So as we stated, we’ve got, I guess, a shout out to our virtual registrants who are listening to this meeting and the quad conference, I think, was really eye opening for me when we really had four societies that came together and I think from there we thought, you know, it’s limitless what we can do and here we are today thinking about can we do working groups, can we have a difficult case webinar, can we have sort of international SLP or allied health sciences working groups to share our knowledge and to work together and recently we even started a subcommittee on DEI initiatives and I oversee the society membership committee and we would love to welcome more members here. And I think when we talk about advocacy, we think about all of our patients coming from all different economic backgrounds and our responsibility to think about where the family is coming from, what do they have access to. I’m not going to recommend an expensive thickening product if I know a family does not have the means to obtain that product and in the United States insurance doesn’t always cover that product. So it’s also interesting to look at culturally where the family is from, what’s natural in their foods that they eat and can we incorporate pureed mangoes or papayas into thickening agents. So just thinking about where the family is coming from, what is their access to healthcare, how difficult is it for them to get to the clinic, how difficult is it to take your child on a vent and a trach into the hospital for an appointment and I think also we have started to see the value of telemedicine especially in our medically complex patients where the family can remain at home and we can continue to provide care and for me there’s nothing better than seeing a child in their own kitchen and looking what’s in the cabinets. So it actually really gives me a window into their natural environment. So just thinking and incorporating those social determinants of health especially for us as speech pathologists and occupational therapists when we’re working on that oral feeding journey. And again I think we’re here to foster collaboration. Dr. Rabbar who’s a friend, a mentor and a colleague joined us at our American Speech Language Hearing Association meeting. Dr. Rosen of our Aerodigestive Center, I’ve taught her to itsy test so she can know how to thicken liquids and then we also feel responsibility to taste all of those maybe not so palatable formulas. So that’s us in Aerodigestive trying out the new peptide formulas. And again we hope that you will join us at our next meeting and we do have lots of ways to get involved and Dr. Brigger had the QR code. I think I’m going to toss it back to. You’re welcome to just to spread the good news as well. You know so we’re here in Santiago which again is just a very deliberate action on the part of the society. We have a tremendous interest in really understanding and spreading this care model really throughout the Americas as a first step and really throughout the world. And so we’re very excited to be in Santiago. Our next actual meeting is going to be in Seattle in October 2024 which will be our annual meeting. I guess maybe the 12th at this point if I can do the math right. And then we’re excited to enjoy a relationship with Inoia and Paphas in Istanbul in late April May 2025 meeting similar to this one with sort of a large Aerodigestive breakout content and then back in Nashville in 2025 in December for our annual meeting with SENTAC which is the Society for your nose and throat advances in children which is another great multidisciplinary organization that makes a lot of sense to pair with there. And unfortunately it’s just off the screen I’m looking at here but you can see it there. We have a Web site. Please visit us. A lot of opportunity to get involved. We really depend on just passionate member leadership. So we’ll talk a little bit about the Aerodigestive Care Model. We’ve got a lot of prologue thus far. What is this Aerodigestive Care Model? We’ve come south pedaling. Basically it’s a broad model right. It’s a multidisciplinary model in which case you have not only again is implied early on an airway surgeon who wants to do the right thing for the patient wants to achieve a good outcome but the recognition that surrounding that patient needs to be multiple voices that are educated from different perspectives that have different advantages understanding not only the anatomy but also the physiology of the condition. So oftentimes the United States that’s pulmonary or what we might call respirology gastroenterology speech pathology again in some environments that’s occupational therapy. But increasingly one has to realize just because you’ve put these kinds of people together we have to be we have to be certain where the convergence of their intellectual talent is. And there’s a lot of distractors right. We could we could say well gosh if if you have these four people assembled for example what about we you know this guy’s got kind of textual aversions and asthma. Well yeah that does cover a couple of specialties but that’s not Aerodigestive Care. The same might be said about a patient with constipation and vocal cord dysfunction something that we might see in an adolescent population but that’s not really Aerodigestive Care per se and yet many things are Aerodigestive Care. And so when we put these kinds of people together these talents together the list of the kind of conditions that we can treat is really staggering and this is by no means comprehensive. I mean in truth there’s a lot of words up there and it probably includes a lot of things but you go on other people’s websites of their inclusion criteria and we’ll find it even broader and a broader appeal for this Aerodigestive Care model across different conditions. Paul Besh did a great job of herding many of us cats together to form sort of the first canonical statement what Aerodigestive Care is. This came out in the Journal of Pediatrics in 2018 and it’s you know it’s a care model that is multiple and interrelated. So the child has multiple and interrelated conditions that really require a coordinated approach to get optimal outcomes and those kinds of conditions were listed on the last slide we can see this is the exact opposite of a disease such as cystic fibrosis where they have a very narrow genotype that creates a very narrow phenotype. In fact these patients have many different reasons to converge in Aerodigestive Care and yet this seems to be perhaps the most appropriate model to care for those kids. As I said it’s multidisciplinary and in the United States it can be pretty big right so this has been running at least since 1997 and many centers sort of around some shell of surgeon GI speech pulmonology have many many kinds of providers at the table and this is barring genetics really what the people at the table look like at Vanderbilt but your table may be even bigger it may have a much deeper bench and so sometimes when you get Aerodigestive teams together to work through this anatomy and physiology you know you can see these are huge organizations where we’re leveraging technology where many of us in the operating room many different proceduralists converging around the patient at the same time big tables of big discussions around patients with complex conditions research going on in tissue engineering and understanding you know how patients with feeding tubes deal with emesis huge you know family gatherings of just really the social side of getting us together because these teams really live and breathe Aerodigestive care and again they’re probably they’re quite big but we wanted to spend a little bit of time talking about the unique intersection between the speech pathology part or the the concept of how airway conditions and feeding conditions work together because I think that’s really a very fundamental part of this proposal. How many speech pathologists or occupational therapists are in the audience today? We’re happy to have you. Why are we here and why do we have a seat at the table? So I always feel like I’m sort of the mediator between maybe the airway surgeon and the family and so we do require specialty training in pediatric dysphagia and in America in the graduate programs we have a dysphagia course and we’re trying to advocate that a pediatric separate course takes place right now it’s usually some lectures embedded in an adult dysphagia course but we really are communicating among all of the roles and we’re developing the least restrictive diet based on what our airway surgeons are saying and we’re the first to evaluate oral feeding readiness postoperatively so right after airway surgery you know can we get in there and do some 5 ml’s of breast milk if mom’s been pumping you know during what’s been interrupted and what was supposed to be a more typical feeding route we really provide more ongoing treatment so patients come to us I might see them monthly we may take them on for feeding therapy and see them every week and then counseling families again on what are the long-term goals for the family obviously to wean off of the tube feeding but also there are times where we have to have a conversation where we have to move over to gastrostomy tube feedings and also as a speech language pathologist being mindful of the whole child and their overall neuro development they’ve had multiple surgeries prolonged hospitalizations they may have hearing loss we want to monitor speech language and then we do see an incidence in screening and seeing early signs of autism and so when someone’s coming in for feeding evaluation are they making eye contact are they reciprocal are they intentional with their communication and if they are not the feeding therapist is often the first person to recognize that because we’ve been focused on all of the acute medical issues that we really want to make sure we’re mindful of what’s happening developmentally and then setting up services and making sure the family is in touch so just some feeding considerations and some of our more complex air digestive patients this is a QI study we did with one of our gastroenterologists that looked at just a sleep survey with families to ask in what position is your child sleeping we know that many of our complex patients are on CPAP and BiPAP many patients are receiving continuous overnight g-tube feedings we do worry about that in patients with aspiration so our gastroenterologists are mindful can we consolidate feedings are they able to tolerate feedings during the day and so in our QI study we did find that many babies were not sleeping supine and 37% of those patients were sleeping with some type of elevation with all sorts of unconventional as you’ve probably heard beach towels and cans of tomatoes and things to elevate the mattress so safe sleep is also in a sleep survey part of our air digestive care and this is just I sort of live and die by this whiteboard in our air digestive center and this sort of kind of guides the day I started in 2004 when we started our charter members of our air digestive clinic with Dr. Rabbar who’s here Dr. Rosen and pulmonary and speech pathology we had one half day session in the morning now fast forward to 2021 where we had 1600 patients which was a 17% increase from the year before also needing to consider COVID as well now our core members as Dr. Wooten told us is dieticians our social work is really important to the team again about transportation to the hospital dealing with durable medical equipment companies getting formulas covered our nurse practitioners our nurses to retape the nasal gastric tubes and we have a complex care physician also on our team now we have three full days of air digestive and three half day sessions of our virtual clinic and you know the numbers seem to keep rising and so one interesting addition in how we deliver care kind of I guess this overlining of COVID has been how we embraced and launched telemedicine in our air digestive center and there’ll be a talk in more detail on this later but pre-COVID all of our air digestive patients are seen in person during COVID we did a pivot like most of us to telemedicine and now post-COVID we do a mix of in-person visits the initial visit is in person but we do have follow-up visits that actually are much more effective if anybody had ever told me for our nurses were able to look at the gastrostomy tube site during the visit our patient up here on the right with the tracheotomy in place we were working on oral feeding this was a single mom really hard for her to get into the hospital down below is a patient out of state so I also think that telemedicine allows us to address equity and health access and to continued follow-up not just in our state but across state lines and so we continue to embrace that model depending on the discipline the reinsurance reimbursement and licensing especially for speech pathologists and other states you do have to check the state guidelines to make sure you are practicing and you’re licensed in other states and then for the therapists out there and all of us the goal of our model is stable respiratory status managing the airway establishing a safe oral feeding plan I’m not sure if this video can play this is a video of a patient it does have audio this is a patient who weaned from his nasal gastric tube and was able to go to a very thick moderately thick liquid with formula and cereal these are reusable pouches so our dieticians are great with coming up with hydration goals and calorie goals and then I’ll talk about one of our aims to really reduce g2 placement and we know we all deal with reflux and we’re also really embracing blended g2 feedings to manage reflux as well and again supporting the family through this journey especially families that are transitioning over to blended feedings and some families make their own homemade blended feedings that are much more nutritious than any commercial formula. So we have four minutes we’re gonna we’re gonna do just fine so all this is to say we’ve shown you kind of a large American model I think just to kind of continually keep in mind it’s really just about keeping the patient’s anatomy and physiology at the forefront of your evaluation so that we can have a very comprehensive understanding of what the patient’s needs really are and then getting as many people on board a priori before we do some major anatomical derangement to their airway so that we can help risk stratify what are the best choices family that you can make for your child and and so it really just starts with a mindset I think Rebecca Moncel presented a slide in Denver recently virtually that was titled something like air digestive mind setting I love that that it really just begins with the concept that that none of us Cara Christopher Matt none of us are an island right we don’t know everything that we could possibly know to bring the greatest benefit to the patient and so how do we start to combine how do we start to ask questions how do we start to get together as teams and those teams you know will look very different just as the world looks very different right there are many cities represented even in the Americas here than in the bottom left I threw on Nile Jefferson’s Newcastle Australia where he was recently appointed the air digestive director there but just to illustrate that we’re very different populations our teams are going to look different in Guatemala our thickeners are going to look different in in South America our payers are going to look different how we’re able to access care is directed by our governments the techniques we may need to apply for the different kinds of pathologies trauma ingested foreign bodies our expectations of even just how our little appliances and and our kind of cultural interface makes sense to our patients is going to be very different but all of it is collaborative all of it is really trying to again bring to bear the resources we have for the benefit of the patient and it does actually make sense right for the benefit of the patient from many perspectives and so you know a series of papers that one could illustrate have been written on how air digestive care does things like reduce the number of anesthetics as we combine more evaluations under a single sedation event it’s easier for patients to miss one day of work or or two days of work in some great orchestrated travel than many that when you ask patients did this seem to help you they feel like it was better than piecemeal care that you can arrive at diagnoses faster and so these papers are out there and I’ve kind of summarized particularly because that didn’t load very well on this next sheet just kind of these these tenants that are very easy to find in the literature and I’m happy to share those papers with anybody who asked them because it’s good to go back to your organizations and say well why why should you pay for me to use this conference room a couple times a month why should you allow me to see eight people and a half day instead of twenty eight people and a half day well here’s here’s some of the reasons you know this this actually does make sense from a family standpoint anesthetic standpoint it actually reduces the number of inpatient days a year so it doesn’t matter if you’re talking about American fee for service environment where there’s a lot of financial ramifications for being in the hospital or just the humanitarian plea there’s a lot of humanitarian reasons why we don’t want our kids in the hospital we’d rather than be on the outside world living at home and receiving care at home air digestive clinics help do that it reduces things like radiation exposure Emily DeBoer has written one article Catherine Hart has written another on really you know how do we like avoid over treatment over testing over over GI workup over impedance probe workup you know team members like doing our digestive care I think Denver’s done a fantastic job of illustrating that in a time in which burnout is so common things like this actually mean a lot to individuals and I think one of the things we don’t do a good enough job finding in the literature is that air digestive care as it continues to develop really becomes a professional developmental outlet for people of pluripotent beginnings right so if learners are stem cells you can see how this becomes a way in which you can differentiate yourself as a general pediatrician as a speech pathologist as a surgeon done a very meaningful and very specific pathway which has an increasingly large international contingent and I will close with finally it actually does get better outcomes one of the ways we’re prosecuting this is through creation of a data registry the air digestive research collaborative which we could talk about more in time and certainly talk about how to share those data it’s been set up as a pilot through eight centers in the United States we’re ready to franchise it with the world the first paper that I ever found that talked about really how air digestive works specifically with airways with this was this paper that Chris Hartnick first author when he was coming out of Cincinnati just looking at what they ultimately discovered was a patient with eosinophilic esophagitis that they’ve done an airway reconstruction check for reflux put them on a reflux medicine didn’t get the outcome they expected started taking biopsy started looking a little bit more further into the patient’s complexity and found really an index case in many ways of EOE confounding airway reconstructed success they treated EOE the patient gets better but it’s about a lot more than just airway and I’ll let Cara take us home there’s a big red times up sign but super quickly and I’m happy to talk offline or during the breaks is one initiative that we looked at was keeping patients orally feeding actually reduced hospitalization and we looked at a retrospective study of a hundred and fourteen patients those that were had orally feeding with thickened liquids and those that had gastrostomy tube and those with the G tube had increased admissions for complications at the G tube site those kept orally feeding had a reduced number of admissions and then total days in the hospital also was increased in the patients with the G tube and it wouldn’t do this topic justice but I will just throw it out there and for my SLP and feeding therapists I’m happy to talk to you about our novel approach that we initially initiated with Dr. Rabbar and our airway team which is weaning children off of thickened liquids we don’t want to keep our patients on thickened liquids longer than we need to we know they’re expensive it’s hard to get thickener it’s a lot of increased calorie load and so this was a retrospective study where we reduced the amount of thickener by ten percent every two weeks and so the thought behind that is that the sensory motor system can gradually adapt and I always say to families it’s like drinking skim milk or water versus a shake you can’t go from drinking really thick liquids and come to radiology and drink thin liquids so the systematic weaning approach one we receive clearance from our airway surgeons and pulmonologists back in the Boston area where I’m from in cold and flu season we don’t wean children off of thickener during illnesses we look at their comorbidities reliability reliability of their caregivers and this is really quick but this is a sample wean how we would increase by one ounce of liquid and slowly retrain the sensory motor system it’s been very effective to get children back on thickened liquids without repeat instrumental assessment and we’ll talk about this again in the instrumental assessment panel at 11 a.m. but for now from my standpoint thank you so much for welcoming us here and think global think globally act locally so I am super excited to be here and I’m excited to continue our work in the aero digestive center and I really think it’s limitless so thank you for having us. [Applause][APPLAUSE] (audience