Swallow the Gap

Defining... Dysphagia?

Tim Stockdale, SLPD, CCC-SLP Season 2 Episode 7

Believe it or not, there is extensive variability in how dysphagia is defined. Listen in as Drs. Giselle Carnaby, Debra Suiter, and Martin Brodsky discuss challenges and importance of defining dysphagia. The discussion highlights variability in how dysphagia is understood and defined across research, clinical practice, and healthcare systems. This gap has implications for patient care, reimbursement, and professional credibility. While acknowledging the complexity of the task, the speakers emphasize the progress made, the importance of raising awareness, and some steps needed to create a more cohesive approach to dysphagia research and treatment.

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Tim Stockdale:

This episode is brought to you by Phagenesis. For stroke survivors with severe neurogenic dysphagia, the Phagenesis Neurostimulation System provides implant-free treatment through pharyngeal electrical stimulation. Learn more at phagenesis. com. Welcome everybody Joining me today. I have Drs Deb Suiter, Giselle Carnaby and Martin Brodsky. How are you all doing today? Doing good, doing well, doing well, all right. Doing today, doing well, doing well, all right. So the reason why we have so many people here today is there was an undertaking earlier this year that extended well on before that, about the idea of defining dysphagia. So thinking about that for a second defining dysphagia most of you are listening to this evaluate and treat dysphagia every day. So you probably are thinking well, that's stupid. Everybody knows what dysphagia is. If you were to think that I am going to throw you to the wolves here and let them dissect it for a second, what is the problem with thinking that we understand the nuances of what dysphagia is?

Debra Suiter:

Well, I can go first. I think we know from our review of literature. So what we did, we did an undertaking that started with a discussion that Marty and I had years ago about how we're defining this thing. We all think we know Because, again, yes, you tell people, you're having a conference on defining dysphagia and it sounds like a no brainer. Everybody knows what we're talking about. But talking to Marty and talking to clinicians, and then diving into the literature and Giselle was really instrumental in helping us figure out how we started to look at this we realized that we're all over the place, at least within the research literature. There is no agreement amongst researchers, amongst clinicians, amongst professionals from different backgrounds as to what this thing is that we're all talking about. Again, we all think we know, but it became very clear we don't.

Tim Stockdale:

What sort of variability did you see Like? What kind of represents maybe some of the extremes?

Debra Suiter:

Do you want me to go so?

Giselle Carnaby:

In the literature, the extremes could be as simple as just a statement of swallowing difficulty to a specific scale that very few people use. There was one that I actually had to look up because I'd never heard of, and that even in a single publication, one group of people might define dysphagia six different ways. So which one is it? So we don't even agree with ourselves within our own publications, which was kind of startling even agree with ourselves within our own publications, which was kind of startling.

Tim Stockdale:

What do you think some of the implications of this are within the research for those who don't have PhDs, like the three of you?

Debra Suiter:

I don't think that helps us, by the way.

Martin Brodsky:

I think, at the very least a common language with a common understanding within healthcare and by healthcare I'm going to be as broad as the person who answers the phone and says and hears from the patient that they have dysphagia all the way up to and past the healthcare provider who gives that care in any form, all the way to the third party, payer and government officials related to Medicare. In defining what's going to be reimbursed based on what and what, coding, et cetera, et cetera. It is a ubiquitous problem across the entire domain that is swallowing disorders.

Tim Stockdale:

I'm thinking of something.

Tim Stockdale:

Yesterday I had an internal chart audit at one of the outpatient clinics I work at and they have a special place for everything, and I had my dysphagia diagnosis there, my R code, but it wasn't in the right place and so, because it wasn't in the right place, it didn't get populated onto the certification letter that the physician signed and it was sent back and it was something that I needed to resolve.

Tim Stockdale:

And so, because it wasn't in the right place, it didn't get populated onto the certification letter that the physician signed and it was sent back and it was something that I needed to resolve. And so, just thinking of that, if you don't have a diagnosis, insurance is not going to pay for treatment, you're not going to pay for treatment. And so I think just understanding what that is, so that the physician can say, well, yeah, they do. When they sign the authorization or an insurance, companies don't have something to contest it with, it makes a lot of sense. So just, you know the sheer importance from a payer source. I mean, that's not the biggest thing, but that is a pretty big thing.

Giselle Carnaby:

I mean, even when you're talking our codes, it's a symptom code, not a diagnostic code.

Tim Stockdale:

Okay talking our codes.

Giselle Carnaby:

It's a symptom code, not a diagnostic code. Okay, so the implication for funding and for reimbursement is different for what we do, and then what constitutes that our code? And it's different in different clinics. So some symptoms we recognize as associated with swallowing disorders where others don't, and so that's part of the problem with definition. Yeah, just even using that code becomes variable, and that puts us at risk of not being paid for our services.

Martin Brodsky:

In talking about. When you speak with NIH program officials, you'll note that dysphagia does not have a home, that is, that swallowing and swallowing disorders is not expressly stated in any mission statement across all of the institutes at NIH, to the point where program officials say, uh-uh, that's not us, that's them. And now it's a little bit of past the buck as to what it is that's going to be the focus of the grant. So, for example, many clinicians in speech-language pathology, many researchers in speech-language pathology, in speech-language pathology, think that speech-language pathology and audiology have a home, if you will, within the National Institute for Deafness and Other Communication Disorders, or NIDCD. That is, in fact, not the case. It's not that the profession has a home, it's that the topic has a home, okay, so I want to draw the distinction specifically within swallowing disorders.

Martin Brodsky:

A person, a researcher, who puts in a grant that deals with stroke up in the air immediately is going to be NINDS. In neurological disorders, it could be NIDCD or, if they're old enough, it could be the National Institute for Aging, nia. That's the issue that we face when it doesn't have a home. Okay, and let me be very clear Many disorders, many diseases don't have a specific home within NIH. Diseases don't have a specific home within NIH. It depends on how you write the grant, but not having this well understood certainly contributes to the problem in not knowing where it exists.

Tim Stockdale:

So just real fast back to somebody who's listening and might not even know. You know what? What is an R code? What is? What is a?

Tim Stockdale:

G code, thinking of the idea that, if we're, when you're inputting a diagnosis, you're trying to get treatment for somebody who you believe has dysphagia that's impacting their life in one way or another, there's an ICD-10 code that you have to put in to tie to that. And so, stepping back even further, giselle mentioned an R code. So what's the difference then between an R code and maybe a more pure diagnosis code?

Giselle Carnaby:

So R is symptom only, okay, which means it extends from another diagnosis code. So there has to be a full diagnosis code. So for any one patient, the diagnosis code could be specific for stroke, or it could be specific for adenine cancer, it could be specific for als excuse me. And so then, depending on the symptom, there's an associated r code, okay, so, um, for example, say the diagnosis is unknown and they can't work out what it is Like. Let's say it's a collagen vascular disease and we haven't typed it appropriately, so that patient doesn't have a clarified diagnostic code. But they may have a whole host of R codes, right? And so that makes it really difficult in terms of if you're trying to bill at that level, your billing codes follow your coding system and billing for an R code is less than you'll get for a diagnostic code. Okay.

Tim Stockdale:

Very interesting. All right, Marty, sorry, I didn't mean to interrupt you.

Giselle Carnaby:

Yeah, this thing about defining this term has specific implications, not just for us all being on the same page, which is also really important, but also on how we get paid and how we identify our services and how we demonstrate that our services are of significant impact. Okay, so clinically, yeah, it makes a big difference.

Tim Stockdale:

So we have a better idea of what we need to do. What have been some of the barriers in being able to get toward this goal, this undertaking?

Debra Suiter:

toward this goal, this undertaking. Well, I think that the biggest barrier that we've identified is just realizing that, the discrepancies and the fact that so many of us are looking at this thing called dysphagia in so many different ways and a lot of us are very wedded to those beliefs. So trying to take a step back and to understand that we need to reach some common ground, I think, has been an issue Certainly. I think the other thing that we realized when we took this on is, again, we thought this was a very simplistic sort of task come up with a definition for dysphagia and, of course, we thought we could accomplish that in a fairly quick manner.

Debra Suiter:

And what I realized, one of the biggest takeaways from this conference that we had a couple of months ago is we spent three hours discussing a framework which was necessary. We needed to take a step back and come up with common ground, but we couldn't even agree on that. So this is a. I think it's going to be a step back and come up with a common, with common ground, but but we couldn't even agree on that. So this is a. I think it's going to be a much longer process than than any of us realized at the start of this.

Giselle Carnaby:

I agree. I think I want to align it with a song and call and say it's a climb, we are at the beginning of this and that's what we've come to realize and, yeah, all the hard work has yet to happen.

Giselle Carnaby:

And so I think one of the things we can take away from the conference we had is that this is a call to action, not just for us but in the future, to get people moving beyond where we are now. We have this mandate that everyone agreed. Yeah, this is a good thing, we should be pursuing this, but then, beyond that, how are we going to do that? So that framework is really important. But then, beyond that, how are we going to do that? So that framework is really important? And then, beyond that, divide and conquer into smaller, more digestible chunks as we move forward to develop it.

Martin Brodsky:

It's going to take more pretty solid product in terms of many disciplines in agreement on how we move forward, that in the end will strengthen every single aspect of funding, of diagnosis, of treatment, of the way that we think, of the way that we approach, maybe just even a solidified approach to research, and that we're all finally on the same page and we can all think about it very similarly.

Giselle Carnaby:

And I mean I think also, tim, you know, a lot of the time when I'm out and about talking to clinicians and people who are just you know they're slogging away out there. I hear you know we're not well respected, what we're doing isn't well respected, it's not well appreciated. I don't feel like they take what I say seriously enough. Part of that comes from the fact that we're delegated to symptom-based approach rather than, hey, we're going to affect the change in something that that patient's experiencing that is life-altering, and that's where moving this from R to something more like G is really important for the professions that work in this domain.

Martin Brodsky:

Dr Greg Jyka, who is the neurologist who joined us for the past two years, made a point and this one kind of sticks with me quite a bit right now, just for background of those who were not present in the conference and not aware of his work.

Martin Brodsky:

His work has primarily focused around dementia and issues associated with mild cognitive impairment, and he has been on task forces within the groups of neurology and others who have addressed what exactly is mild cognitive impairment, and he was one of the foremost leaders in spearheading how to get there, first and secondly, moving from the R to the G code, the R to the G code.

Martin Brodsky:

And one of the things that he brought to light was that in order to do that, you need buy-in from physicians and, broadly, the American Medical Association. In order to do that, slps simply are not going to be successful by themselves. That's straight up, no mincing words here. We need partners in this, them. We need to be on the same page with them, we need to move in parallel with them. Certainly, we can have disagreements, and disagreements are going to make us better, but in the end and at the end there's going to be a collaboration that takes place where all groups are on the same page. That takes place where all groups are on the same page, and you're going to have people who can take this to the AMA and say it's time we need to move from the R to the G.

Tim Stockdale:

There's. I've kind of have a one track mind in this that I'm looking back at the systemic issue, like you mentioned, the idea that speech pathologists are not going to do this on their own. We need partners to be able to appeal to the AMA to make something happen. But also I step back and think about just our training Again. I also see, like the Dunning-Kruger and everything, you know a little bit and you think you know a lot, and how I believe we're trained in speech pathologists. We learn so little about so much and so we have very little depth.

Tim Stockdale:

And so when it comes to something like dysphagia which, as we all know, has tremendous implications on the individual's health, wellbeing, quality of life, so many different areas there is so much depth to it because it involves interplay between various body systems.

Tim Stockdale:

If you get an individual who's 80 years old and they're healthy but their functional reserves aren't what they were when they were 20 years old and they get sick, and how that can cause a transient, so to speak, manifestation of dysphagia, but just the complexities of this. And so I think one of the things that we have going against us right now is our training, just our training, and being able to give us the foundation to better understand this and to better understand the impact of it on health, cause we're talking about moving it from a symptom to something greater than that, to to to a condition it sounds like. But if we don't understand how all of these things interact, how are we going to be able to advocate for that? So I see the benefit from one, from a credibility standpoint, if we partner with laryngologists and gastroenterologists and neurologists and so on going into this, but also from the perspective, too, of getting their understanding of how these things tie together. So that need for a cohesive web where we can all communicate together, for a cohesive web where we can all communicate together.

Tim Stockdale:

What is interesting to me? At this conference, for example, the majority of individuals were speech pathologists. How do we get that buy-in from physicians? How do we get more physicians coming to the table and being willing to discuss this so we can move forward with more momentum?

Debra Suiter:

Well, I think the thing that really stood out to me is you're looking at the three of us that organized this conference. We're speech-language pathologists and certainly, while we reached out to our physician colleagues, having somebody who's going to champion our cause on the physician side of things is we just need to find somebody who's invested enough to do that and it's I mean, it's sad to say we should be able to advocate for ourselves, of course, but you're right, we need that physician buy-in and yeah, and so we've included them.

Giselle Carnaby:

We deliberately included them in our conferences, but, again, we didn't have nearly the representation from from the physicians that we did from speech and some of that, to be honest with you, is a meeting logistic issue as well, because I mean getting physicians time means providing cme credit and to have physicians advertised for us, and that you know Rome isn't built in a day. I mean, we did get physician representation at that conference. In fact Dr GK spearheaded it. So you know we do have some depth on the bench, one might say, but that depth certainly needs expanding and that's food for the future, Absolutely.

Martin Brodsky:

I think there's a little bit of a culture among the societies related to dysphagia in that I think every single one of them, the majority of the attendees to any one of those conferences, the majority of the members to those conferences sorry to those societies are speech language pathologists. So there is a culture that's part of this. That's not to say that you know across the societies. To give you some idea, dental is a gigantic part of the Japanese Society for Dysphagia Rehabilitation. It is not a giant part, except to say that we have dentists from Japan who are members of the Dysphagia Research Society. There is a culture here and it's within country, never mind across countries and around the world. And it's within country, never mind across countries and around the world. So we made very big attempts to getting people who wouldn't even ordinarily attend Dysphagia Research Society in North America. We reached to gastroenterology, neurology, physical medicine and rehab, intensive care, pulmonary and critical care medicine, ent. Every one of those were not only on the invite list but they were present. So yeah, as Deb and Giselle have said before, the depth is certainly there.

Martin Brodsky:

I think what we need to work on right now is that there's a lot of interest by virtue of those folks to be there. I think we need to work on the numbers and I think that's part of the problem. It's not just what we're doing, it is more broadly the way that the culture has evolved, related to swallowing and swallowing disorders. And let's bear in mind I'm not going to throw anybody under the bus here, in fact I'll defend it Dysphagia, as has been brought to light in speech-language pathology, only began in 1992, when it was recognized. So here we are, 32 years later. Okay, we are young. There's a lot more to grow.

Tim Stockdale:

Some of us were there when it evolved, I was on my third grade playground man. A lot there, a lot there. It's something that I think is very promising. So, dr Jyka, he's a colleague of Dr Suter, right, okay so, and he was, you know, not just coincidentally instrumental in the advancement of defining dementia or mild cognitive impairment. Forgive me, I'm going to miss some of the nuances of that. But so you and what you've been doing, deb, have had enough credibility and enough influence with him to be able to get him on board with this, which I think is great.

Tim Stockdale:

And it speaks to the potential that is there, for when speech pathologists get a lot of depth in dysphagia and really, really understand the nuances of what we're talking about, that we can get buy-in from others outside. And so I guess that's one thing I'm taking away from that. But also I'm thinking, you know, oropharyngeal dysphagia as a, as a physiological concept I mean that exists in our wheelhouse, like that's our thing. If you're talking about esophageal dysphagia, it's primarily gastroenterology, and if you're talking about, you know, the anatomy and physiology of the upper aerodigestive tract, at least the pharynx and the larynx, and you're, you know, otolaryngologist, but when you get into the physiology of it, that seems to be something that primarily resides with us and we are.

Tim Stockdale:

We're at a disadvantage because we're not physicians, and I'm not saying that that shouldn't be there. I think we can do it. I think we can do a great job. I think there's some things that we can certainly tweak in education to become better, but considering it's just been since 1992, I mean that's fairly impressive. I think that's fairly impressive that we've been able to get as far as we have gotten, and so I don't think the effort's unnoticed.

Giselle Carnaby:

I think, tim, you also need to realize that other countries are doing things differently. So at the moment, you can take a specialty degree out of Belgium and you can become a deglutologist. You can become a specialist in this area. I think, with a little crystal ball going forward, you're going to see more of that.

Tim Stockdale:

Yeah, I agree.

Giselle Carnaby:

And that, by the way, is not an SLP degree. Physicians are taking that degree too.

Tim Stockdale:

Really Now, if that does catch on, how do you see that influencing this all in the future?

Giselle Carnaby:

And I guess I mean that's so potentially so far. Maybe it's hard to speak to. Well, if we're able to, as a group-disciplinary group, get to a definition, I think that just ensures that pathway even more absolutely so.

Tim Stockdale:

We've talked about a bit about what we need, why we need it. We've talked some about how do you think we're going to get there and the challenges that we're going to have. Let me me just if you were to. We've talked about different nuances to that, but if you were to summarize in your mind how you think we're going to get there and maybe one of the primary challenges, could I just hear a little bit like a brief synopsis for each of you? And if you wouldn't mind, I should have asked you to do this at the beginning. When you say this, just say who you are the first time, so people know your voice.

Debra Suiter:

You do this at the beginning. When you say this, just say who you are the first time, so people know your voice. Sure, so I can go first. It's Deb Suter.

Debra Suiter:

So, in terms of how I think we're going to get there, I think we've hit on a lot of it already. I think we need we need to get buy in from the, the groups that are the key stakeholders here, from the groups that are the key stakeholders here, and one of the things we haven't mentioned in this discussion is we need to get buy-in from patients and from patient advocacy groups as well, and third-party payers. So, I think, getting the right players to the table and again, we're very proud of the fact that we did have as many different disciplines represented at this conference and the conference we held previously but getting that buy-in and then realizing that we have a huge, huge task ahead of us and breaking it down into smaller parts and coming up with focus groups that are going to be able to take on that task. It's a task that's bigger than the three of us and we need to start recruiting more people to get involved.

Tim Stockdale:

Okay, thank you. Thank you. Who wants to go next?

Giselle Carnaby:

Me Okay. So this is Giselle Carnaby speaking. So I see this as a multi-year action, and so I think what we're looking at is the development of working groups on specific aspects of this so that we can start to break down that categorisation that we began to investigate in this first conference. I think we're going to have to work on partnerships and their partnerships with other societies, not just dysphagia society, but also with the medical societies at different places that have an invested interest at the moment in this symptom code and what it would mean for them if this changes and advances. And I think, along with that, you're going to need to start to see a regular yearly review of progress of those groups coming back to a central body and that's how medicine has done guidelines and building guidelines and building from R to G codes, and I think we're going to have to follow the same tried and true pathway.

Martin Brodsky:

Well, I'm Marty Brodsky and I agree with both of their perspectives, and I'll add perhaps one more, and that is just to say that it's going to take all of us working together.

Martin Brodsky:

It's not one group, it's not one profession, it's not even one country, but it's all of us working together toward this common path.

Martin Brodsky:

So you know, I'm aware that at the European society for swallowing disorders conference, there has now a combined or coalition of what is now the World Dysphagia Coalition across five groups around the world. Who are these societies that exist is one coalition across these five major groups of membership, country-based, or at least continent-based societies related to dysphagia. That's a step in the right direction, and now we have a way, at least in this consolidated format, to bring all of us to the table a little bit easier than we did even moments ago. That's what this is going to be. It's going to be consolidation, it's going to be ultimately consensus and, make no mistake, even though we're talking about professions and countries and so forth, it's still going to be governing bodies like the American Medical Association that are also going to have to be a partner in this. It's just a little bit later down the road, once we have something a little bit more solid, that's evidence-based, that we can present them as a unified format.

Tim Stockdale:

I mean, you look at such an evolution and thought in this, when you think of just how do we define dysphagia, versus the more you're digging into it and you're looking at all the nuance and you're looking at all the things that have to happen for us to get there to a unified definition, I think it's extremely difficult to see, if not impossible to see, the magnitude of how many not small steps, but just how many steps it takes to get to this, and so it looks like it's unfolding really beautifully. To me, there's been a precedent set by others within this, so there's a pattern. There are people who are invested in this. It sounds very promising and I really personally appreciate that in a number of levels. I want to. So you, marty, and this is for anybody, but you had mentioned it's going to take all of us working together. I'd like to really wrap up with so, for listeners, for those who are here listening to this in whatever setting they might be in, what does all of us working together look like? What might it look like for them?

Martin Brodsky:

What might their actionable steps within this be. It's interesting you mentioned that because, as you were talking just now, I was thinking about what are the steps? We haven't even defined those yet. I don't think anybody has. This is, in every aspect, a dynamic situation that is responsive to the information that's gathered at every single point. So, to know where we're going to be tomorrow sure, we're finishing up our scoping review we need to put together a summary paper for what occurred at the conference, and both of those papers, in and of themselves, are going to suggest steps to move forward. Whatever happens in those next steps will dictate where we go next. I don't have those answers. I don't think anybody does from a broader perspective.

Tim Stockdale:

From a broader perspective and I know I I beat this dead horse all the time but just the idea of of us continuing to build credibility, to not just credibility Let me take that back Us building the depth of our knowledge. Building the depth of our knowledge within dysphagia, within the populations that we work with, understanding the etiologies that lead to what is this symptomatic diagnosis of dysphagia right now. Better understanding that, I think, is going to help us to better understand the reason for this, why we need it. It's going to help us to build credibility. But also, I mean, what about the idea of what you are doing? You're raising awareness of it.

Tim Stockdale:

I mean, how many people, just in the last three months, through your conference that you all have held, this has been placed on their radar and now they're like I didn't even know that was a problem, but now they know it's a problem and they have some sort of thing that's driving them with purpose to get this accomplished. And so just, I don't know. A couple of thoughts. I like to oversimplify things like that, but I know it's a lot more complicated.

Martin Brodsky:

I want to come back to your credibility comment and I don't want to underestimate at all the amount of credibility we already have, you know, since let's just call that that 1992 benchmark. Okay, 32 years of research, 32 years of experience, multiplied by the number of clinicians and researchers that are part of that. There's credibility there. What we're trying to do, I think, is refine and get better reimbursement and get better acceptance across the healthcare professions for what this disorder is. I think part of what you just mentioned in terms of more people, more people now being aware, that was a huge first step in all of this. That was this year. It was awareness. It was bringing everybody on. It was getting everybody onto the same page in some form of consensus. That's a giant step. Think about the hierarchies that we've all learned as clinicians with regard to cognition Awareness and sensation come first. If you don't have that, nothing else matters. That's where we are and it just builds from here.

Giselle Carnaby:

Love it. Yeah, I just want to echo a little bit of that but also put something in people's minds. I mean, I see what we're doing here as much like when the World Health Authority created the ICF. It's just as complicated, and they did it over a series of years and developing this conceptual framework and then slowly building the framework out to the different definitions of different components that contributed to that. This is kind of where we're going, and you know we can take lessons from other people, but all of those people that contributed to that framework, from a multitude of different professions, that's us.

Tim Stockdale:

Very good. Well, thank you everybody. Again, we have Drs Carnaby, Brodsky, Souter and myself. Thanks for listening. If you have any questions after the fact, don't hesitate to reach out to me. I can kind of forward the emails or contact as needed, and I guess that's it. That's it for today, but this is just one little tiny baby step and the mammoth elephant we're trying to eat here. How's?

Giselle Carnaby:

that for an outro, I don't know man, I got stuck.

Tim Stockdale:

But anyway, thank you all for being here. It was great Appreciate seeing you and hopefully we'll talk soon, thank you. Thank you and hopefully we'll talk soon.

Debra Suiter:

Thank you.

Tim Stockdale:

Thank you. As a reminder, our episode sponsor is Phagenesis, maker of Phagenix Neurostimulation System for pharyngeal electrical stimulation, not to be confused with neuromuscular electrical stimulation. Please visit our sponsor at phagenesis. com to find out more. Thanks for tuning in to another episode of Swallow the Gap. Love to hear from you, so please reach out anytime when you have a moment, share this episode with a friend or tell a colleague about us. I hope this episode has been beneficial to your practice and has sparked your curiosity.

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