Episode #113: Adapting the A-FROM to Dysphagia to Guide Whole-Person Care: A Conversation with Theresa Yao and Jocelen Hamilton

Aphasia Access Conversations

I’m Ellen Bernstein-Ellis, Director Emeritus of the Aphasia Treatment Program at Cal State East Bay and a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources.

I'm today's host for an episode that will feature Jocelen Hamilton and Theresa Yao from Stanford Healthcare. We will discuss how adapting the A-FROM to swallowing disorders can offer a person-centered approach to assessing and treating a person with dysphagia.

Guest Bios

Theresa Yao is a licensed speech language pathologist at Stanford healthcare and a lecturer at San Jose State University. Her clinical and research interests include head and neck cancer rehabilitation, voice disorders, dysphagia, and aphasia. She is passionate about serving people from diverse backgrounds with communication and swallowing disorders. She was a fellow for life of the Albert Schweitzer Fellowship program, and co-founded the Bay Area's Swallowing Support group. She has been actively volunteering in community groups for stroke survivors who need communication support. She has always been a strong advocate for her patients and profession.

Jocelen Hamilton has practiced as a licensed speech language pathologist for 19 years. She specializes in management of communication and swallowing disorders in adults with head and neck cancer. She began her career at the University of Iowa Hospitals and Clinics, and then joined the Stanford Outpatient Head and Neck Clinic in 2020. She also previously served as a clinical assistant professor for the University of Iowa's Communication Sciences and Disorders department with a focus on supervising graduate students and helping individuals with strokes and brain injuries. Her current clinical interests center around the development of frameworks to facilitate whole person care for individuals with swallowing disorders.

Listener Take-aways

• Think creatively about how to apply the A-FROM to other communication disorders, like swallowing
• Learn how dysphagia can impact the participation, environment and personal domains
• Consider some PROs that help to capture the impact of dysphagia on quality of life of both the patient and the caregiver
• Explore some ways to adapt EMRs to incorporate A-FROM or Swal-FROM into your daily notes

Show notes edited for conciseness and clarity

Ellen Bernstein-Ellis

So I'm excited to have both of you here today. Thank you and welcome, Theresa.

Theresa Yao 00:55

Thank you, Ellen. I'm glad to be here.

Ellen Bernstein-Ellis 00:57

And Jocelen you too.

Jocelen Hamilton 00:59

Yes. Thank you so much for having us.

Ellen Bernstein-Ellis (Interviewer)

Welcome both of you, again, to this podcast. And as our listeners get to know you, we like to open with a fun icebreaker question. I'm going to pose two different questions that you've selected for today. So, Theresa, let's start with you.

I guess for full disclosure, I want to admit that, I will share--I don't have to admit, I am sharing that I had the honor and pleasure of being your supervisor at Cal State East Bay in the Aphasia Treatment Program (ATP). So I know that may come up today. I just want to let our listeners know that we've known each other for a while. I have been really fortunate in that relationship and seeing you emerge and thrive as such a wonderful contributor to our field.

So Theresa, could you please share one experience or role that has been meaningful to you as an aphasia ambassador?

Theresa Yao 03:22

Thank you, Ellen. It was great experience when I was in the Aphasia Treatment Program at Cal State East Bay. So that's actually one of the experiences I wanted to share as an opening, because I was at the Aphasia Treatment Program as a co-director for the choir, Aphasia Tones. And that was one of the best memory in my life. And I remember one time, one of our members who had more of a severe expressive aphasia, and usually has minimum verbal output, and we all know him. But whenever he starts singing, Can't Help Falling in Love, this particular song, you can hear that those beautiful words just came out right out from his mouth, fluently, beautifully. He was always so happy every time that he heard the music, and he just enjoy singing along.

That was just a really amazing moment for me to realize that people with aphasia with minimum verbal output, they can still enjoy and participate in choir, and can still communicate that way. It's just showed me how powerful it was to use the Life Participation Approach to Aphasia. And in our choir at that time, we have all different levels of severity. All members join together, and then they all enjoy and engage in this choir experience. So that's really meaningful. Whenever I think of LPA, I think of him, I think of this song, and I think of Aphasia Tones.

Ellen Bernstein-Ellis 04:54

Thank you for sharing that. And Theresa, it was wonderful to have you as a co-director. And see you step up to the challenge of leading the choir. And you're right, we really have a strong motto of participation at every level. And you really worked hard to make sure that happened. So thank you for sharing that. And yes, that's one of my favorite topics, so I loved hearing about that.

And Jocelen, I'm also excited to ask you to share with the listeners something about one of your experiences. So would you like to share an Aphasia Access, favorite resource or moment? What comes to mind for you?

Jocelen Hamilton 05:28

Yes, well, this is really neat for me to be on this podcast, because it is this podcast that is a favorite of mine, and a major “aha” for me.

Ellen Bernstein-Ellis

Well, thank you, just thank you.

Jocelen Hamilton

I worked with patients with head neck cancer for about nine years. I then did a major shift and then worked in a graduate training clinic at the University of Iowa. And during that time, previously, when I was at the hospital with a very heavy caseload and working with individuals with dysphagia. And so then switching over and working with individuals with strokes and brain injuries, that was much more communication focused.

And I had this caseload I was taking over with the graduate students and learning about all the current treatment principles and treatment options and all the research that had been developed. It had been probably close to 10 years since I had worked regularly with individuals with neurogenic communication disorders.

I had knew nothing about LPAA. I knew nothing about Aphasia Access, the organization. And I was thinking about this recently, of how I even came across it. But I think probably I was searching one of these treatment modalities, and a podcast came up. So I listened to some of the other podcasts and I was like, oh my goodness, this totally resonated, LPAA. And the podcasts and other resources through the website, totally resonated with me, and helped me better understand what my frustration was within an impairment only based approach, which was in my training and my background, and things like that, to like see a whole different way. So I learned as much as I could. And I tried to share all of that with my students, we were all learning together of how to implement this. So it's really neat to now be a part of this podcast and participate.

Ellen Bernstein-Ellis 07:32

We're so glad you agreed. And I just want to thank you. If there was ever a wonderful plug for membership to Aphasia Access, I think you just gave it. Thank you so much. for that.

Well, let's dive in a little bit more to our topic of the day. We're going to be talking about how and why you both decided to adopt the A-FROM or the Framework for Outcome Measurement of Aphasia by Kagan and Simmons-Mackie to your work with head and neck cancer patients. So I know we usually focus on aphasia, but we're taking this really important tool and talking about how you adapt it. So many listeners are, of course already familiar with the A-FROM. But can you briefly describe the social model framework for our listeners?

Theresa Yao 08:16

I can start with just a brief introduction. I think everyone, if you're listening to this podcast, you are already very familiar with A-FROM, which is based on the World Health Organization's ICF model. They address a few health and social domains such as body structure, function, activities, participation and contextual factors like personal and environmental factors. And like Ellen mentioned before, Dr. Kagan and colleagues, adapted this ICF model to create a very user-friendly framework for the outcome measurement in aphasia. And this becomes the Living with Aphasia Framework Outcome Measures the A-FROM and it has the domain of aphasia severity, which is the body function or impairment level, and then also participation, environment, personal factor. So these are the core concepts of the LPA approach. Thats what we are based on using this A-FROM to adapt it to this Swallow-SWAL-FROM, we call it. The Living with Swallowing Difficulties framework of measures.

Ellen Bernstein-Ellis 09:22

So let's talk a little bit more about this. Jocelen, do you want to share your story as an SLP and how you came to introduce the A-FROM into your work at Stanford in the head and neck cancer clinic?

Jocelen Hamilton 09:37

Sure. So after about a year and a half of working with individuals with aphasia and applying LPAA and using the A-FROM with clients, I then changed gears back to working with people who had neck cancer and we moved to California and I joined the Stanford team and I was back into primarily working with individuals with dysphagia. I just kept thinking about how can I take this model the A-FROM and apply that to working with individuals with dysphagia.

How I would previously use the A-FROM is that Venn diagram. I would just draw it on a piece of paper and start writing my notes on that as I was maybe doing an intake or working with a client. I started doing some of that model just in my note taking and looking at these different domains that might be impacted.

And this was just kind of over a series of months, and even a year, where I was thinking about how to apply this and shared it with my patients. Here are some of the things that I'm seeing and what you're sharing with me that shows your participation is being impacted.

Then I ended up talking with our director, Heather Starmer, about an idea of a project—like how can I move this ahead. Theresa had recently joined our team and Heather said, you might want to talk to Theresa about that. She might be interested in doing a presentation on this. And so it was great, because Theresa and I had not yet talked about our aphasia backgrounds together. It was really neat to then work together and begin to apply this with more of our patients. Initially, we kind of struggled with what the environmental domain look like for somebody with dysphagia. And it was neat to talk through different cases with each other to see how it could apply. And then that's where the Swal-FROM came from.

Ellen Bernstein-Ellis 11:39

Wow, that's wonderful that the two of you were at the right place at the right time. And I always feel that the expression “stronger together” seems really fitting in this situation. But Theresa, do you want to share how you brought a life participation perspective into your work at Stanford?

Theresa Yao 11:57

Yes, sure. Because I've always been a big fan of the ICF model. When I was a student clinician in Aphasia Treatment Program, I learned so much from this model, from LPAA, and from Ellen, you. And also, of course, our members in our Aphasia Treatment Program. And I just could see the huge benefit from the LPA approach in the client's life.

So that's why once I started working in real clinics, I always think about this model. And when I started in at Stanford, I started working with the head neck cancer patients. I just feel like so many patients, they live with long term dysphagia, or a sore throat because of the neck cancer treatment they had. And they sometimes just can't get rid of it. They have to live with it. It's just like aphasia. They live with aphasia. And then it just clicked. I just think that it's pretty similar to the situation that you're living with aphasia, and it's that same impact on patients quality of life, on their participation.

Then I just started thinking, maybe we can do something with this model to help our patients. And then, of course, Jocelen was there, and then we were just talking about her experience with aphasia treatment and LPAA. And we just clicked. That's why we came up with this (ASHA) presentation, and this idea of how to adapt this A-FROM to our Swal-FROM. And then also, we're talking about this because I also started a support group because I feel like people wanted to get connected. They wanted to engage like aphasia group. They wanted that community to be able to participate, to be able to share. So that's why I think this also helped me to try to initiate this project, this group, so that we can help more people so that they can, they can help each other.

Ellen Bernstein-Ellis 13:56

I really love that you saw the power of group therapy, and you then were able to bring it into a different treatment arena. I really don't remember hearing too much about separate support groups for people with swallowing disorders. I don't know how common they are. But it sounds wonderful that you started one, Theresa. So very exciting.

What do we know about the incidence of dysphagia in stroke survivors, and then people in skilled nursing, and from there, head and neck cancer? The reason I ask because I think there's overlap. I mean, you're seeing the dysphagia in head and neck cancer, but we know that it occurs frequently. Do you have any numbers to share about the incidence in stroke survivors?

Jocelen Hamilton 14:39

Yes, so it's about 45% of individuals with strokes experience, some degree of dysphagia and there's been research that's shown 40 to 60% of older individuals in nursing homes have dysphagia. There's even some research out there that one in 25 adults will experience dysphagia. Then when we look at individuals with head and neck cancer, and this could be on the lower range, but one of the particular statistics is 45 to 50% of individuals with head and neck cancer experience dysphagia.

Ellen Bernstein-Ellis 15:11

The importance of considering the whole person (for dysphagia tx) is really going to affect a lot of people that we might be seeing as therapists. And the two of you saw that there was a strong impairment focus in dysphagia management. Can you give an example?

Theresa Yao 15:27

I can talk a little bit about this. When I was in grad school, I know that most of the things we learned was how to identify the impairment of dysphagia. We learned all kinds of treatments and exercises for dysphagia. We learned like how to modify diet, how to look for aspiration, penetration. Almost everything we learned, and also what we've been practicing in our clinical practice are heavily focused on the deficit and impairments. That's basically how we trained to assess and treat the physiological changes or the deficit. It just, to me, sounds like it's really technical.

I recently just look up the ASHA NOMS, the National Outcomes Measurement System-- that's what we usually use as judgment of whether the patient is making progress or not. They use this particular functional communication measures to see there's like different levels. If you're really looking at this national measurement system, you can see that the wording and the definition of each level is pretty much impairment focus. They mention diet level, safety, efficiency of swallowing, compensatory strategies, or cues, etc. So these are really heavily focused on impairment, but you don't really see like things that relate to participation, quality of life, environment, and those factors. So the consequences that if all the clinicians are just looking at the impairments and not looking at other factors, then you are missing a lot, you're not treating the whole person.

Ellen Bernstein-Ellis 17:11

Well, that's perfect, because that leads me to my next question. Why is it important to go beyond the impairment level measurement with dysphagia?

Jocelen Hamilton 17:24

I would say, because dysphagia is more than a physical difficulty. That's our name for that physical impairment. But it influences more, just like we know, with aphasia, that it's not just how much they can say, what they understand in the different modalities, but how a change in this function in the body influences everything.

So one of the analogies that I can relate to, that I've heard before in terms of looking at accessibility, has to do with like, physical impairments. So if somebody is paralyzed, they can't move their legs, well, the physical therapists are going to look at their legs and see the range of motion, their strength and all of that. But they're also going to think about how are they going to get into their house? And how are they going to move around?

Well, sometimes what can happen with dysphagia, as Theresa already talked about, we're looking just at how does that epiglottis move? What is the airway invasion like? But then are we going to talk about well, what's going to happen? We just had the holiday with Thanksgiving and the holidays now. What are family meals going to look like? I think one of the things that sticks out to me is what would my day to day life and social life be like if I couldn't drink with ease and comfort, I couldn't eat with ease and comfort, if I needed to have special food and special liquids and special strategies? So this impacts so many things within a social realm, and personal realm as well. We'll get into that in more detail as we go. But it's not just about the change in a physical function. How does that influence the rest of our lives? And it really does. There's been research that shows about burden and quality of life and psychological health.

Ellen Bernstein-Ellis 19:08

Well, this really hits close to home for me. I'm going to share with our listeners a personal story, because I've always been very passionate about our field and an advocate for speech language pathologists, but being on the other side of the table, when my husband was diagnosed with terminal cancer, did nothing but increase my own respect and appreciation for the role we play in supporting our clients and their loved ones.

Through this process, specifically with dysphagia, and I want to give a shout out to my husband's speech pathologist at Stanford, Heather Starmer, (and another congratulations to her because she just was made a 2023 ASHA fellow), but I'll just always remember the day that we came in. I know that Heather was set with her treatment plan-- I could already guess what we needed to do for the day. And that plan went out the window because we both signaled, Steve and I, that he was just feeling an increasing burden of trying to manage all of the home tasks we were supposed to do for both PT and speech, and it was just really impacting how he was feeling. And so instead, Heather focused on the personal impact and the quality of life issues that we were bringing up. Steve wanted to be compliant. He wanted to be the best patient there was. But she really listened to him carefully. She brought her best counseling skills to the table that day, and helped us come up with a plan that we could manage in a way that would help us sustain his quality of life as best as possible.

So I really saw, personally, I mean, I saw day in and day out how his dysphagia from his head neck cancer really impacted, hugely impacted, his participation with our family, and his quality of life. I am grateful for this work that you're doing and the passion you feel for looking at the whole person as you assess and treat dysphagia. And thanks to you, I've been reading, since dysphagia is not usually in my wheelhouse as much these days, but thanks to preparing for this particular episode, I was able to read some articles by Rebecca Smith and her colleagues that showed me that there's some amazing work being done looking at this whole topic, so thank you for that. Okay, and taking a deep breath, because that's a story I've been thinking about for quite a bit.

Back into our next question. What is the speech pathologist’s role in assessing and addressing health related quality of life and the associated mealtime quality of life? That seems to be talked about a lot in the literature right now. Jocelen, is that you again?

Jocelen Hamilton 21:57

I'm glad you mentioned Rebecca Smith's work. There are actually three papers, I think, that that group, she and colleagues, put out in 2022. And specifically, I'll share a few quotes from their paper The True Cost of Dysphagia and Quality of Life: The Views of Adults with Swallowing Disability, but in a way, there's a call to action, and she's not the first to mention it. But for us to include social participation, and their overall well-being, as part of our dysphagia intervention. To make that routine, and then to also ask questions: How are you doing? How are the holidays? How are these social settings with eating? I like to ask patients and their family members, and ask them separately, not meaning like individually, within the same session: Are you participating in doing this, the same things that you did before your diagnosis? Or how is that looking? Are you going out to eat as much? What do you miss now that is different and you're experiencing changes in your swallowing.

And it's interesting, because sometimes the partner will say that they miss going out to eat, and they need to navigate feelings like, “Well, I don't feel comfortable eating this in front of my loved one who has difficulty swallowing. I feel conflicted about I get to eat ribs, and they don't.” Those kinds of things. The importance of eliciting these stories, so we can really see what are their challenges, because then we can, like LPAA teaches us, we can engage in this creative problem solving and how we can help navigate through some of these challenges. I think those are a couple of important things that we can look at to support people.

Ellen Bernstein-Ellis 23:45

Thank you. And I just wanted to let our listeners know that we're putting all these references into our show notes. I took some from your ASHA presentations that I attended. So those will all be cited in the show notes.

Well, to expand to the participation, environment, and personal domains, you started to think about using patient reported outcomes or PROs for assessment. Why don't we go through the domains and discuss potential tools and interventions to fill out this framework a little bit more. So what might it look like if you consider participation?

Jocelen Hamilton 24:24

When we're looking at participation, we're looking at these meaningful activities may or may not involve oral intake, but looking at their current levels of participation compared to their pre cancer status. So how often, and in what ways, is someone with swallowing challenges participating? I kind of already talked about that a little bit. And how are the family members doing?

Here's one of the interesting things that I've had patients share here. Sometimes, one of the swallowing strategies that a patient needs to complete is a purposeful throat clear, and a re-swallow, or some patients do naturally their throat clearing, or maybe they're coughing when they're eating and drinking. This is an area where it calls attention to them when they're doing this. And then during the pandemic, we were all super hyper aware is somebody clearing their throat? Is somebody coughing? I've had some patients where they really don't feel comfortable because it calls attention. And people ask, how are they doing?

And also, another challenge being that when swallowing is hard, talking and swallowing is extra hard. When swallowing is challenging, most people need to just do that, where we take for granted that meals are a very social time. So some of those issues can be really challenging. There's also some individuals where their difficulty with swallowing has to do with loss of the bolus coming out and so there's almost changes in appearance, where they may not feel it. Their lip, their chin might be numb, and they don't know that liquids are dripping out, or they have a piece of food sitting there. So, they might be hesitant to go out and participate in different social settings. Even sometimes we have patients where they don't feel comfortable eating with their own family members, where they will eat completely separate from their spouse.

Ellen Bernstein-Ellis 26:28

I am just really struck again about the overlap of some of the things in your head neck cancer patients with clients I see with aphasia. It’s really striking. So should we take a moment and discuss how this might look if you consider the environment?

Jocelen Hamilton 26:44

I really didn't address a PRO at all.

Ellen Bernstein-Ellis 26:46

Oh, it's not too late. We can still do that.

Ellen Bernstein-Ellis 26:52

Why don't you go ahead?

Jocelen Hamilton 26:55

Sure. Okay. So we're looking in this interview, right, like gathering information, learning how these things are challenging for them. For patient reported outcomes, PROs, Theresa, and I both looked into different ones. And oh, this one has these questions. And this would fall within this domain. So I'll touch base on a few of them here. And then some of them, they have questions that actually apply to all of the domains.

So for these, there's one the Swal-QOL, this is probably the most broad in terms of looking at all of the domains that are within this Swal-FROM. It has 10 different quality of life concepts that it has specific questions for. So for this one, there's one subset that's all about social functioning. Some of the questions, they’re rating from either strongly agree five point scale to strongly disagree, One of the questions, for example, is “I do not go out to eat because of my swallowing problem.” That really tells you where they're at with that participation, or “Social gatherings like holidays or get togethers are not enjoyable because of my swallowing problem.” So that really hones in on that challenge.

Within our specific area of practice with individuals with head neck cancer, there's a scale called the Performance Status Scale Head Neck Cancer, PSS-HN. Now you might think, how might I use this? I encourage people to be open minded, even though this wasn't validated. And some of these are not validated on individuals who have dysphagia from a different cause other than head neck cancer. It doesn't mean that you can't use it as a way to gather information, engage, and perhaps re administer.

I'm also a big fan of, as people fill this out, having a conversation about their responses as they go to gather information. But with this, the Performance Status Scale, there's a specific rating scale about public eating. So zero means always eats alone. And 100 is no restriction of eating for any place food or company. So they would eat out at any opportunity. Where in-between might be one point on the scale, “eats only in the presence of selected persons and selected places”, or they would eat out but there would be another option, “eat out, but be more selective about the diet textures and things they would consume in a social setting”, which is common. Some individuals will specifically choose different foods when they're when they're in a social setting.

There's also another PRO, the Dysphagia Handicap Index. So with this one, it's a 25 item questionnaire and it does specifically look at physical, functional and emotional aspects of dysphagia. And so a couple of questions from there that would fit with the participation domain include, “I'm embarrassed to eat in public” and “I don't socialize this much due to my swallowing problem”. Those could give some insight into these areas by selecting some of those questions.

Ellen Bernstein-Ellis 30:08

Well, I'm really glad you caught me. I think I was so struck about the overlap that, thank you for coming back and talking about those PRO's. Are we good? Can we transition to the environment next? What would this look like? What does the Swal-QOL look like if you consider the environment.

Theresa Yao 30:29

When you talk about the environment, it can be factors such as the availability of the appropriate food textures, and oral liquid consistencies across different social settings. For example, if you go out to the restaurant, are there any easier food texture that's available for people with dysphagia? And that's one of the environmental factors.

And then there's a new article from ASHA leader that just came out about dining with dysphagia. So that's actually a pilot program from University of Cincinnati that try to help restaurants to expand their menu options so that they have more choices for people with swallowing disorders.

Ellen Bernstein-Ellis

That's amazing.

Theresa Yao

Also, another factor that related to the environment is the attitude and level of acceptance or support the people with dysphagia can get from their family, their friends, or even just strangers in their eating situation. So just like Jocelen mentioned, if you're coughing or clearing the throat, what the reaction from other people will be like, -- if they're supportive, or if they're not so. Sometimes these factors can make a patient uncomfortable eating out because of those environmental factors. And then also, the attitude from people around usually can be impacted by culture. Which type of textures they prefer to consume, and how they consume. If you go to a different type of restaurant, they may have different types of food textures, that are specifically for that culture, so that's also another factor.

And then also, on the broader spectrum, is the attitude from the healthcare professionals or the public, because the attitude from healthcare professionals is basically, because dysphagia is invisible, and when you are in the hospital, not everyone can see it. If you have leg injury or arm injury, people can see it. But if you have dysphagia, you can't see it. And then when the health care provider is, prescribing your pills, and if you can't swallow, how can they take the pill? They probably are not aware of this, this type of disability, so they may not prescribe you the right pills.

These are the things that we can consider as environmental factors. And of course, even larger scale, there's health care policies, the service systems, that may impact the people with a dysphagia too, because insurance may not pay all the dysphagia services, or how often can people get dysphagia support or service? So those are all the environmental factors that we may consider.

Ellen Bernstein-Ellis 33:21

I think the importance of this framework is helping us as clinicians to continue to think just broader and more widely about what's impacting the person in front of us. I mean, wow, you are giving us a lot of factors, from the very personal to the broader social policy. And I want us to take a moment and also talk about personal factors, that whole domain.

Theresa Yao 33:41

Personal factors can also be very, very important. And a lot of things can be involved. So we know that the person was dysphagia may not be the same person, have the same hobbies or same traits, as before their treatment. So that may cause anxiety, or they may feel embarrassed because of their eating habits, or the change of their eating habits. Because we know that eating and drinking is very individualized. Some people, if they're born as a slow eater, they probably are okay with their dysphagia diet or if we ask them to eat slowly and take smaller bites, that's totally fine. But if some people are born as a fast eater, they will have a huge challenge with, if you give them the strategy to eat slow, taking small bites, because that's just not them anymore. They just feel like they're a different person and then they feel disappointed or frustrated if they can't eat as fast as they used to.

And I always share this in my clinic. I see two patients with similar procedures. One person can feel really happy with their diet. They feel okay because they're always eating soft foods or soups. And then another person just with a little bit of impairment of mouth opening, they feel like it's just really frustrating because they can’t bite their sandwiches and burgers. And that just makes a huge difference. But if you're only looking at their swallow study, it's the same, they probably don't have any major impairment, but the impact on the quality of life on their participation, environment, and also personal factor. It’s so different. So that's why I think considering a personal factor is really important.

Ellen Bernstein-Ellis 35:38

So you're giving us examples of the things we should be thinking about, you're giving us examples of some of the PROs that might help us measure. But if many of the EMRs, the electronic medical records are set up for impairment focused measures, how can you adapt the documentation to include these other domains? That's always a barrier, or can be maybe, not always, can be.

Jocelen Hamilton 36:00

I think sometimes it can be a barrier. If sometimes the entry is just you have to click certain things, there’s not a lot of room for free text. With the EMR that we have, we can have a set template, but we can copy and paste anything in there. So what I did is I took the A-FROM--actually, in the same paper that put out the A-FROM, they put the FROM, Framework for Outcome Measurement, and actually suggest that you could use it for individuals with TBI and called it TBI-FROM.

I took that and put it into a template and have the citation for it there and then added a title. It gives a visual for other individuals reading the note of what I'm talking about. ‘Survivorship beyond body function domain: Dysphagia’s impact on personal, participation, environmental domains’, so I have that as a title. I have it as this set, we use epic, so I can do dot phrases (Smart Phrases). I can drop that into a note. And then as I go through and document, I have the subtitles of body function, participation, environment, personal factors in as I'm collecting this information. That's how I can organize my note.

I don't do it every single time with every single patient. Sometimes some of our sessions are more impairment focused, like we need to for safety reasons focus on this. Sometimes it's more a whole session all about how are they doing with their personal domain? I had a patient in the clinic today, and he is depressed, and we just had this quick talk of, “Okay, what do we need to do? Can you talk to your primary care doctor? This is common, many individuals with head neck cancer have depression.” But I'll organize my note, getting back to the notes, with those subtitles and putting the information in there. It also is a cue for me, because I keep needing cues and reminders to come back and broaden that focus, instead of always being in on the impairment and you monitor, document, and then monitor, as I'm reviewing back on their notes to see how they're doing across these different domains.

Ellen Bernstein-Ellis 38:19

That is a beautiful example of how you can adapt something. I'm sure a lot of our listeners really appreciate you describing it so carefully, and hopefully will inspire some of them to see what they can do to adapt their EMRs.

A little bit earlier, you mentioned the importance of getting perspective from both the client and the care partner. How does the caregiver or care partner experience fit into the Swal-FROM?

Theresa Yao 38:47

Caregiver or care partners, they play a really important role in this whole journey with individuals with dysphagia. And I'm sure Ellen, you probably were in that role before. Most of the time, it's the caregiver making the meals for the spouse. Making the meals for the patients with dysphagia can be very challenging. Because just the texture, you have to take care, and the taste. I have caregivers talking to me. They told me that they tried their best to make all the foods but the patient didn't eat at all or didn't like it at all. Then they feel super frustrated. These are all the challenges that the caregivers may face.

Dr. Samantha Shune and colleagues, they did a lot of work on this caregiver burden topic. Their study said increased caregiver burden has been associated with the degree of impact that dysphagia is having on mealtime logistics. Family members also report increased anxiety and fear and frustration, stress, embarrassment and social isolation. So these are very two critical things to consider when we're thinking about whole person care, because we can't just care for one person, the patient. But if the caregiver is also experiencing all the stress, all the anxieties, we also need to consider that factor.

Researchers in Australia, Professor Nund and colleagues, they also pointed out that this specific caregiver burden is third party disability. And it's the consequence of that person's impairment, which impacts the functioning and ability of their family members or significant others. That's why we want us to fit this caregiver experience into this Swal-FROM framework. Just adding the family caregiver in all the different domains to support patients with dysphagia. And caregiver can influence four domains. But at the same time, also, we need to take care of, examine, the four domains of the family member or the caregiver--going to check their participation, their environment, and their personal factors. Those are really important, because their health and well-being can be affected by being in the journey of taking care of people with dysphagia. So they're super tied closely. That's why we wanted to fit this framework as well.

Ellen Bernstein-Ellis 41:21

One of the clinical tools I've learned is available is a PRO measure called the CARES, developed by Shune and colleagues, and we'll again put the citation in our show notes. Theresa, could you describe that a little bit more?.

Theresa Yao 41:37

So this is a wonderful screening tool that developed by Dr. Shune and colleagues. It’s full name is called Caregiver Analysis of Reported Experiences with Swallowing Disorders. It has 26 items in the questionnaire. And then there's two parts that explore a different aspect of dysphagia’s impact on the caregiver. One is a checklist on the behavior and functional changes, and one is a checklist of the subjective caregiver stress. Basically, it's a simple yes/no questionnaire. You can give it to the caregiver and they can just circle yes or no. Then from that, you can figure out what area you may address as an SLP. Or you may want to refer them to a specific team or professionals to address that, because we have limited scope of practice, we can't do everything. But if we can help them to identify the issue and then point them in the right direction, to the right team. That may help a lot.

Ellen Bernstein-Ellis 42:43

In your ASHA presentation you also mentioned the Rome Foundation is a resource and another website that offers skill building around managing serious illness conversations. We're going to put both of those resources into the show notes for people, but we don't have time right now to go into them fully.

But Jocelen, can you address or share what benefits you've seen by adopting this framework? Does it help with goal setting? Does it help with acceptability of recommendations? What have you seen?

Jocelen Hamilton 43:12

I think it's helped me and I feel like it's helped patients and our families have a little more clarity about, okay, these are the areas that are challenging. And again, I'm a visual person, so if I write it out with them, and they're telling me things, and I'm explaining, I get excited about the diagram, and I'm like, you know, see, this seems like an area of challenge. Is there something that you're interested in doing in this area? Are you willing to talk with another person who's gone through this?

So I feel like it really can give clarity, I think, for myself, what you know that A-FROM does, and Swal-FROM now is to not, I professionally can get really hung up on the impairment. And I can't always change that, right? We can't always change it to the degree that we would like. Of course, we would like everybody to have complete resolution, right? And so there can be this frustration and powerlessness with that. And obviously the patients and our family members can be experiencing that also.

And with this broader view, we can say but here's what we can focus on what can we do to have you participate that would make you feel better? What can we do that would help you with your personal feelings? So I feel like it addresses things that matter and we can have more conversations about how is their day to day life being impacted? What are some small steps we can take in a direction that might help them and their families.

Ellen Bernstein-Ellis 44:43

That's beautiful. Thank you so much, Theresa and Jocelen. It has been a pleasure and I’ve learned so much from both of you, listening to you apply this framework and look deeply and carefully at quality of life for people with dysphagia. I really appreciate it. Is there anything else you want to add?

Theresa Yao 45:03

I just wanted to add a little bit. So I think it's really important as clinicians to listen to our patients and caregivers, because we need to learn from their experiences, their perspective. And, like we mentioned dysphagia is invisible. I wanted to share one of the quotes from one of the dysphagia support members. He says, “dysphagia is a label you carry with you inside.” And that's really just so true, because it's hidden. If you go outside, people see like you what you can walk, you can talk, but they don't know that this disability is hidden inside. And I think it's so important to address not just the impairment, but also listen to the patient's perspective. And then help them to address all the domains. I always think that you become a better clinician because what you learn from your patient. So that's all we need to do.

Ellen Bernstein-Ellis 46:08

I can't think of a better way to close this interview. Even though I could ask you several more questions, we could be here for another hour, I just want to thank you for bringing that patient's voice, a client's voice, into the discussion today, so beautifully. And let's end on that note of really learning from our patients’ perspectives. So I want to thank you both. And I want to thank our listeners for listening today. And for the references and resources mentioned in today's show, please see our show notes. They're available on our website at www.aphasiaaccess.org. And there you can also become a member of our organization.

Jocelen Hamilton

Yes, yes, Do it!

Ellen Bernstein-Ellis

Thank you! Browse our growing library materials and find out about the Aphasia Access Academy. If you have an idea for a future podcast episode, email us at [e-mail]

For Aphasia Access Conversations, I'm Ellen Bernstein-Ellis. And thanks again for your ongoing support Aphasia Access

Resources and References

Ariadne Labs: Serious Illness Care Program

https://www.ariadnelabs.org/serious-illness-care/serious-illness-care-program/

The Rome Foundation

https://theromefoundation.org/

Chen, A. Y., Frankowski, R., Bishop-Leone, J., Hebert, T., Leyk, S., Lewin, J., & Goepfert, H. (2001). The development and validation of a dysphagia-specific quality-of-life questionnaire for patients with head and neck cancer: the MD Anderson dysphagia inventory. Archives of Otolaryngology–Head & Neck Surgery, 127(7), 870-876.

Hamilton, J., Yao, T. J. (2023). Framework to Guide Whole-Person Care for Individuals with Dysphagia. 2023 ASHA Convention, Boston, MA.

Hamilton, J., Yao, T. J. (2022). Shifting to Whole-Person Care for Head Neck Cancer Survivors Living with Dysphagia. 2022 ASHA Convention, New Orleans, LA.

Hickey, E. and Douglas, N. (2021) Person-Centered Memory and Communication Interventions for Dementia: A Case Study Approach. Plural Publishing, Inc.

Howells, S. R., Cornwell, P. L., Ward, E. C., & Kuipers, P. (2021). Client perspectives on living with dysphagia in the community. International Journal of Speech-Language Pathology, 23(2), 201-212.

Kagan, A., Simmons‐Mackie, N., Rowland, A., Huijbregts, M., Shumway, E., McEwen, S., ... & Sharp, S. (2008). Counting what counts: A framework for capturing real‐life outcomes of aphasia intervention. Aphasiology, 22(3), 258-280.

List, M. A., D'Antonio, L. L., Cella, D. F., Siston, A., Mumby, P., Haraf, D., & Vokes, E. (1996). The performance status scale for head and neck cancer patients and the functional assessment of cancer therapy‐head and neck scale: a study of utility and validity. Cancer: Interdisciplinary International Journal of the American Cancer Society, 77(11), 2294-2301.

McGinnis, C. M., Homan, K., Solomon, M., Taylor, J., Staebell, K., Erger, D., & Raut, N. (2019). Dysphagia: interprofessional management, impact, and patient‐centered care. Nutrition in Clinical Practice, 34(1), 80-95.

McHorney, C. A., Bricker, D. E., Kramer, A. E., Rosenbek, J. C., Robbins, J., Chignell, K. A., ... & Clarke, C. (2000). The SWAL-QOL outcomes tool for oropharyngeal dysphagia in adults: I. Conceptual foundation and item development. Dysphagia, 15, 115-121.

Nund, R. L., Scarinci, N. A., Cartmill, B., Ward, E. C., Kuipers, P., & Porceddu, S. V. (2016). Third-party disability in carers of people with dysphagia following non-surgical management for head and neck cancer. Disability and rehabilitation, 38(5), 462–471. https://doi.org/10.3109/09638288.2015.1046563

Shune, S. Moving beyond the isolated swallow: Dysphagia in the context of the shared mealtime. https://dysphagiacafe.com/2015/03/19/moving-beyond-the-isolated-swallow-dysphagia-in-the-context-of-the-shared-mealtime/

Shune, S., Davis, C., & Namasivayam-MacDonald, A. (2021). Contributors to Dysphagia-Related Burden Among Spousal Caregivers of Stroke Survivors. Archives of Physical Medicine and Rehabilitation, 102(10), e65.

Shune, S. E., & Namasivayam-MacDonald, A. (2020). Dysphagia-related caregiver burden: Moving beyond the physiological impairment. Perspectives of the ASHA Special Interest Groups, 5(5), 1282-1289.

Silbergleit, A. K., Schultz, L., Jacobson, B. H., Beardsley, T., & Johnson, A. F. (2012). The dysphagia handicap index: development and validation. Dysphagia, 27, 46-52.

Smith, R., Bryant, L., & Hemsley, B. (2023). The true cost of dysphagia on quality of life: The views of adults with swallowing disability. International Journal of Language & Communication Disorders, 58(2), 451-466.

Smith, R., Bryant, L., & Hemsley, B. (2022). Dysphagia and quality of life, participation, and inclusion experiences and outcomes for adults and children with dysphagia: A scoping review. Perspectives of the ASHA Special Interest Groups, 7(1), 181-196.