Great. Well, welcome. So why don't we get started. Here's some of our objectives or our actual objectives, I guess. We're going to be talking about TBI as a chronic disease, giving some evidence and some ideas for why TBI could be considered a chronic disease, maybe should be considered a chronic disease, and then talking about how this... the barriers to providing care in a chronic disease model, both in acute rehab as people are leaving out of acute rehab and also in the community, and then kind of what we in PM&R can do in this realm. So here's our plan. We're going through this path, the path I walk a lot. First, I'll be talking to you about TBI as a chronic disease. Then we'll talk about some of the issues that people face as they leave rehab, some of the issues they face in the community, then we'll have some cases, and then some time for discussion as well. So I'm looking forward to hearing what you all think about this topic. So we do have this. There aren't going to be QR codes, at least right now. So if you want to take out your phone and go into this thing called Poll Everywhere, and then this is the name of our poll or poll questions. There's like five in there and you could have interactive. It might be interactive, it might not, but you know, just the idea that the systems don't always work together. So I'm sorry about that, but that's a big issue that we face in chronic TBI care too. So kind of emblematic of what we're dealing with. So that... And I assume the talks that you've been to probably have had some QR codes. Sometimes it seems like it's been working in some talks, but not all the rooms. So that's... If you wanted to log in some of the questions, maybe it will be interactive. Oh, thanks. You already answered the first question without a QR code. So thank you. So just to get a little bit of interactive here. You don't even have to be truthful, but describing your most frequent work kind of setting. So looking more at the system, right? Is it one of these? I don't know how much time. It probably won't give us a full amount of... That's so great. So thank you for putting some stuff in there. It looks like a lot of us are in the nonprofit, some are in the VA military, some are in these for-profit systems, and then other maybe combinations or not quite sure or that kind of thing. So thank you. Thank you for replying. So what we are seeing in this room is kind of what we see throughout the country, right? Is that there's multiple systems that people are in and multiple types of systems where they're receiving care. How about we go to the next one? And this would be... I don't know if that one... Oh, it's open too. Thank you. Where you kind of do most... And I was putting this together. I didn't realize I could have more than four options. You know, I always feel limited in my options, but... So it doesn't have... Oh, it does have nursing home, but maybe not all the transitional care and sub-acutes and other things that people are doing, home care, that kind of thing. So when looking at just... Thank you everyone for participating here and seeing where most of us are working. You know, at least in this room, you know, TBI providers, PM&R providers, working a lot of inpatient, a lot of outpatient, some of these other settings, the sub-acute to long-term care, some combination seems to be the most common here. So I think you have some of these answers and you see some of these issues all the time. So I think this will be a good discussion to have about these issues of TBI as a chronic issue or illness. Well, thanks you guys. That's great that you did that. Appreciate everyone participating. So why don't we get started with thinking about why we might consider TBI as a chronic condition and how we can consider that. How can we even talk about it that way? So starting with, you know, kind of big picture, the World Health Organization has criteria for chronic disease, something that's permanent, something that's caused by a non-reversible pathological alteration, and something that necessitates a prolonged period, right, of observation, supervision, or care. And that seems like most of my patients with moderate to severe injury have all three of those criteria, right? So it seems like at least from that definition of chronic condition, TBI seems to fit. And then the sequelae of TBI are not static, right? So years after moderate to severe injury, people can get new declines in function, right? And at least 30% of people at 10 years have a decline of at least two on the Glasgow Outcome Scale Extended, which as we know is a pretty big decline in function. And then there's also these progressive degenerative processes that can occur after injury. I wanted to also put some shout out and gratitude for the people in the reference box there, Dr. Corrigan, Dr. Bogner, Dr. Hammond, Dr. Damsel-Connor, maybe some of you in this room have worked with them. And they're doing just tremendous work in this realm of thinking about TBI as a chronic condition and thinking about how we in rehab can help people deal with related issues. And so I think this wording is actually directly from a talk I heard Dr. Corrigan give. But moderate to severe TBI, if we think about it this way, can be seen as a process, right? Not an event, but a process. And a chronic, chronic changing process over time. More evidence here, moderate to severe TBI is associated with the development of other health issues. A significant increase in the presence of all of these conditions after moderate to severe injury compared with individuals who did not have a moderate to severe injury. So this is 10 years after injury, somatosystems data. You can see the heart disease, the endocrine dysfunction, the mental health challenges, and the neurologic dysfunction that people experience after TBI at rates significantly higher than individuals of the same age who did not have a TBI. Also the TBI sequelae that occur later, right? They're directly related to the TBI probably, but they occur later. So the cognitive issues, the frontotemporal dementia, Alzheimer's, other kinds of dementia, Lewy body, motor issues related to Parkinsonism and others. Compound effects of multiple injuries, right, that occur or have occurred. Mental health challenges and how those kind of snowball into other problems. And then ongoing issues related to things that we've been dealing with since the injury, right? Maybe they had hydrocephalus and now there's a problem with the shunt or there's ongoing seizures and things have changed. Symptoms that really have been going on the whole time but now somewhat are changing, often worsening. Medication effects. Maybe over time the medications are working differently, they're interacting differently, they're interacting differently with a body that now has heart disease than they were before the heart disease came on. Those kinds of things. This waterfall is in a city park right by where we work and I think it's a good kind of analogy, right, of like there's so much going on and you never quite know what it's gonna look like, you never quite know what's coming down the pike for these issues but you can kind of anticipate that something's happening or something's going to happen and how we can focus our attention on those things. Also remembering that common illnesses and injuries that people experience just over time, in the course of life, can lead to more problems in people who have had a moderate to severe TBI than people who haven't, right? So like the same stroke in someone who had a bad TBI 10 years ago is different than in someone who hasn't. Same thing for cardiac, pulmonary, the cancers, nerve issues, other injuries that people sustain. You know, maybe just a fracture of a bone but that someone else should just be able to recover from can be a lot harder to recover from when that's their only good leg or whatever it is. And the life expectancy after moderate to severe TBI is on average seven years shorter than someone of the same age who hasn't had a moderate to severe TBI. Seven years. Why? What are possible reasons for this? Well, the TBI, right, it causes biological changes, right? The brain isn't working as well. It's not regulating things as well. Maybe that's why the endocrine processes come on. Maybe that affects some of the other health challenges people sustain over time. But what about that column on the right, the challenges to health management? Because I know some of you are thinking about this, right? Yeah, we said that they get these health conditions more than someone of the same age. But can you really compare someone of the same age who's had a brain injury to someone who hasn't? When someone with a brain injury might have now different financial resources, they may have less participation in all kinds of activities, including exercise. Maybe they are having trouble accessing care, behavioral symptoms, cognitive impairment. Cognitive impairment is an independent risk factor for not being able to access healthcare, right? For lots of reasons, but that might be affecting this morbidity and mortality over time in these people. So what do we do about it? This is a report that came out of the National Academy of Sciences a couple of years ago. And it's about TBI care in the US and how can we improve that care. And they looked at it kind of in a big picture, right? Looking at systems. So I liked hearing what kind of systems you guys are working in, that we're all working in. But how can systems work better together? And not just healthcare systems, right? But the employment system, the insurance systems, other stuff going on within our country. And how can we work together, government, private sector, public sector, all kinds of ways to provide better care overall. And some kind of models or things that are related to that recommendation. One of them is this addition of TBI to the list of chronic conditions. Okay, so this is huge, right? This is coming out in a few months. The Brain Injury Association and other groups have been really advocating for this. But this is a policy change, right? At the policy level where CMS is adding TBI to its list of chronic conditions. It'll only be for a very limited amount of people. So it's people who have CMS Medicare Advantage plans. And it's like a managed care plan within some Medicare Advantage plans where the people who have chronic illnesses can be given certain resources, including case management. So this will be coming out for a very limited amount of people in a couple months. But it might be something that we hear more about. And then an approach like the one that the VA has where looking at TBI as a chronic condition, really considering it that. And this has been going on since at least 2015. The VA has a polytrauma system of care and there's sort of hubs and spokes and different places where people access this care. But if veterans kind of on a certain metric have a certain score, they become then designated as someone with a chronic disability. We hate that term just as much as you all hate that term. It wasn't come up, we didn't come up with it. But the chronic disability designation is then at the national level, something that's then given to all of the places where that veteran receives care. And we try to highlight veterans who might be at risk. So then they're gonna as a result of having this designation, you're gonna require to have regular engagement with the specialty team. That's with the TBI provider. And that includes some social work or nurse case management. And the teams have to, we reach out proactively at least every year if they're not seeking care in the interim and trying to connect them to the most appropriate resources. Really trying to focus on keeping things good, right? Anticipating challenges and kind of addressing them maybe before they become bad. But then also having some kind of veteran specific stuff, you know, mental health and those kinds of things. But also knowing that if they are gonna be at risk for these other conditions, how are we gonna look out for those and sort of treat them as they come up. At our VA, because we are kind of one of those polytrauma sites and so we have a lot of resources. And this veteran, not only did she approve of her picture being up, this picture is from a poster where she is the poster child for an adaptive sports event. So that's great news. But we have about 300 of these people and they've had, their injuries are somewhere between a year and 57 years ago. This is when we looked at the data a couple months ago. And 57 might seem like a long time ago but that was like Vietnam era. So we do have a number of veterans who follow for injuries they sustain there. Most of the injuries are moderate to severe. Most are traumatic, although there's some people who have non-traumatic as well. And we just really try to address challenges that arise. Try to proactively anticipate and handle issues. And then we have this lifetime case management model where social workers and nurses as case managers kind of reach out over time. So some examples might be, we know someone's receiving care at home. Their caregiver is maybe their mother and now their mother's sick. We know that because we're in regular contact with that family. What are we gonna do as this mother's illness gets worse or something else is going on? And we're able to anticipate and hopefully be able to help them with some of those issues before they get really, really bad. And then also really trying to focus on how are we gonna optimize their quality of life? How are we gonna optimize their engagement, their participation? And that's why we call it wellness, right? Because maybe we can prevent some of those other medical issues from coming up if they are able to participate in things that are enjoyable and healthy. I don't know if I can... Maybe I'm not doing it right. Oh, here we go. And then just as our last slide here, talking about the VA is a good model and we love it. But knowing that it's not just for the VA, right? Because so many of us train at the VA even if we don't end up working there. And then just knowing that so many other chronic disease models that the data came out of the VA have affected health in other parts of the healthcare system, pretty much everywhere. So hopefully this will be a good model that if people find it helpful can be used in other systems as well. So let's see if I can ask you guys, will this work? Let's see if it works. Does this one work for you to just put in some barriers to treating TBI as a chronic disease? Hang tight, responses are coming in. I don't know. It might make a word cloud or it might not. But either way, you're getting to think about what the barriers you see are. Oh, here it comes. Look at you guys. Oh my gosh. on it. So as you're kind of doing that, we're seeing these issues, right? And maybe as we can take a look after the response has kind of slowed down. So it seems like insurance is a big one, right? Support, resources, some of the symptoms they're having. These are all really important barriers that you see for how to do this. How do we do this best? So thank you for sharing those. Why don't we kind of give it another second and then we'll... Okay. So that, I think that's just a perfect segue because now what we'll talk about, we'll get to the next part of our talk. Thank you, Diane. So my name is Erica Travato. I'm a medical director of an inpatient brain injury unit at Burke Rehab over in White Plains, New York. And this part of the discussion is really going to be about the fact that TBI is a chronic disease and it really does start right from the beginning of when the patient presents. But most of the time the patients and the caregivers aren't comprehending that this just wasn't a singular event, that this is going to have sequelae for the rest of their life. So a lot of times that first introduction of that concept and how this is now going to change their loved one's life is really happening when they're on the inpatient unit. And having that discussion, providing that education, it really does start, I think, with the patient and the caregivers having acceptance of what we are saying to them and how this is going to affect them for the rest of their life. As we all know, I'm actually in a non-profit institution, but as you had all pointed out, there are so many barriers to getting patients home and allowing them to thrive, you know, with them having now a TBI and having that as a chronic condition. So it's really important for us as the physicians, as part of the medical staff, to really start rapport building and starting that from the beginning and making sure that we are making ties to keep them in the healthcare system. We know that patients who have sustained a TBI are at a much higher risk for medical complications and everything that Diane had spoken about. And keeping them in a healthcare system and really keeping eyes on them is going to be really important for them from a prognostic standpoint. We also know that this is becoming increasingly difficult, right, because of length of stay issues and insurance approvals and having to get prior auths. And, you know, some of the downfalls or the pitfalls of healthcare are really making our job a bit tougher. So all of this education, everything that we need to do is getting scrunched into a much smaller piece of time. And so we really have to be cognizant to start things right from the beginning when the patients come into rehab, right? They come in, day two, we're already speaking about discharge, which is oftentimes overwhelming, but it is the reality. So what are some of the barriers that we're seeing in getting patients directly home? Obviously we all know that we want patients to get home. We don't want them to have to go to a different level of care. We don't want them to have to go to a SNF or anything other than the home environment. However, there are barriers to this. And what we're trying to do really is look to see what are these barriers, how do we get around them, but really it starts with identification. It's having that interdisciplinary communications with your nursing team, with your wound care team, you know, with your therapy team if it has to do with, you know, DME or things along those lines. But the one that's probably most standing out to us at this point is what the medical complexity is for the patient and how are we going to address their very personalized needs in order to get them home. So we know CMI, at least I can confidently say that, the patients feel a lot sicker than what they were years ago. And so they're coming in on, you know, six weeks of antibiotics. Maybe they have a PICC line, maybe they don't. And maybe they have really complex wound needs. Maybe they are coming in and they're new to oxygen and they don't have those resources at home. Maybe they have a new diagnosis of cancer and they've never had established care. Maybe they don't even know that they have cancer yet, right? So maybe they have had, they presented and they had excision of a mass and a biopsy, but they haven't had the discussion yet that they actually do indeed have cancer and what the plan is going to be. And so really, you know, as our CMI has gone up, as our length of stay is expected to be at least stable if not decreased, we have to figure out how to circumvent and deal with all of these issues right from the beginning. So I know now, you know, my residents will say, oh my gosh, Dr. Travato, the patient has a PICC line. I know, I'm going to get that report. I'm going to get that ready because I know home care is going to want that. Or making good connections with infusion companies. You know, complex wound care, you know, we have a wonderful wound care nursing team and then we have knowledge of what the wound care clinics are out in the community and being able to really speak to what their resources are. Respiratory, excuse me, respiratory status, like I said, maybe the patient's new to oxygen, but we get our respiratory therapy staff in quickly and provide that education and determine what's needed and what's covered. And then in regards to cancer, I think that this is still something that's truly evolving. I don't think cancer treatment is really set up for the inpatient setting, mostly from a cost barrier perspective. But really trying to align with our partners in the acute care hospital for them to know what we're able to handle and be able to approach from a rehab standpoint. But really trying to get those patients home as quickly as possible so they can go for their PET scan. So that they can establish care and get on with the next part of their journey. But making sure that they're strong enough to do so. Another common theme that we've seen is lack of access. So whether it's the patient has 20 stairs that they have to be able to negotiate and they don't have the support to help them in that regard. It might be door frames, right? So maybe the patient is being recommended to go home at a wheelchair level, which isn't ideal but sometimes the reality. But they can't access their bathroom or maybe into their kitchen. In regards to transportation, depending upon what the geographical landscape is, transportation needs are going to be vital. Let's say the patient wants to go to outpatient therapy and they need to get back and forth. Or if they have to go for infusions once a week. So we have to account for transportation. The healthcare system in and of itself can sometimes be a very daunting area to get into. I, as a physician, I have troubles getting into and accessing a different healthcare system for my children. So I know that for patients who maybe English isn't the first language or they're just having difficulties and are naive to a healthcare system, this can be really challenging. And then obviously also we all know that the financial barriers that go along with this as well. So these are all in regards to lack of access. We also do take at our institution patients who come in on charity. So those have always been challenging in regards to setting them up with services and which is really required and demanded great alliance within our healthcare system. So that is also something that has been posed as an additional challenge. We also know after a TBI, we can expect that there will be a different behavior or personality that has been very, very difficult for families and caregivers to be able to accept and just the realization that this may be long-term effects. I think initially, right, we can say that maybe it's the anesthesia or maybe it was, you know, sedation or whatever it was that may have changed the patient's personality. But when they are aware now that things are a bit different and this is now how I'm going to have to approach my loved one, whether it's with medication management or if it's with psychotherapy or if it's going to have to be with monitors to keep an eye on their loved one 24-7. These are all differences that, you know, no one necessarily ever asks for, right? No one asks to have a TBI. And all of this is now landing on the patient, but a lot of times the caregivers. And physical assistance, right? It's one thing to tell someone that you're going to have to watch your loved one, but it's going to be another thing to tell them that every time they get up and that they have to move or they have to go to the bathroom or they have to get rolled in bed because they have complex wound needs on their sacrum. The physical aspect of this is really tough. And as our population is growing older, a lot of the immediate spouses or the caregivers are not physically able to provide that assistance. And then finally, my favorite is supervision. Basically, in brain injury, we know that we should expect our patients are going to have cognitive deficits and a lot of times they're going to need someone to look out for them. They may not have the insight, the awareness. Basically believing that they've had a brain injury that has altered their mental status and their cognitive function. A lot of times patients don't feel like they need to take medication. So medication compliance is really a big issue. And they may need assistance with managing their finances. Maybe they have a history of substance abuse and so their environment is not conducive. And then also with a psychiatric history. So what does the literature tell us in regards to how we're doing as the medical providers in regards to getting our patients home? And how has that experience been for the patients and then for their caregivers? I will say that we have work to do. I think that this is an excellent area of improvement where we can continue to build. And I think the literature really does show that. So I'm just going to go through a couple of studies here. This first one was just looking at the experience of discharge for patients with an ABI from the inpatient to the community setting. And what they found was in this review article that there was a high satisfaction associated with engagement and support from the primary rehab team before they left. They had poor satisfaction that was associated with poor communication, limited interaction, disorganized arrangements for social services and support services. And what they felt is that we needed more of an emphasis on tailored education and involvement of the patient and their family or caregiver. I know we all want to have as much time during the day as possible to sit down and discuss everything that we possibly can in regards to TBI and what to expect. But we're challenged. Our time is really challenged during the day. And so what typically will happen is, you know, maybe we gloss over subjects and we don't have the time to actually sit down and go through things in greater detail where that's really what's on the mind of our patients and their caregivers. This is another study that was published recently that looked at facilitators and barriers to discharge destination after being in an acute inpatient rehab unit for brain injury patients. And facilitators to getting patients home, right? Like what's going to help them get to a home dispo? Access to health and other services from their home environment, right? So having the transportation set up, not having 25 stairs to negotiate to get down and be able to get into their doctor's appointments. And then availability of help from a family caregiver. Well, that's one of the most challenging things that I find to fulfill, right? I mean, not most, but a lot of our patients have caregivers that are maybe not physically able. Maybe they're not time available. Maybe they're the caregiver for others in their life, whether it's their parents or their kids or whomever else. So that has been challenging, but that is associated with better discharge destination. And barriers, which I thought was interesting, are incongruent perspectives, right? And then unclear knowledge about available health and other services at home. So really it's that resource utilization. What is in my community? Who can I call? What do I do if my loved one is agitated and I'm fearing for my safety? What do I do? And so some of the more basic questions and basically setting patients up and their caregivers for ensuring that they are comfortable with different scenarios. This is another study that came out that looked at health and wellness and safety concerns for patients who have sustained a moderate to severe TBI and their family caregivers. It was a qualitative analysis, so they sat down with 10 TBI patients and 9 caregivers and they said, okay, what can we do better? What do we need to do? And they basically said, you need to educate your healthcare providers and increase awareness because we're not getting the information that we need. And then we also need to really hear more of the realistic expectation for life after discharge. So again, it's just hammering home the tenets of that education and ensuring that they are provided with the resources that they really need in order to help their caregiver or help their patient as much as possible. Another one here is just the experience of patients with TBI and their caregivers during transition from inpatient rehab to the community. Again, it's more of these same themes that we're seeing in all of this literature. However, these authors went so far to propose that they need really to have a case manager to be involved at all stages of their journey after having left the healthcare facility. I think this speaks to the fact that oftentimes you're very insulated when you're in a rehab setting, right? You have all of these interdisciplinary people checking in down in therapy, hopefully the medical team and your nurses and everyone. And then they leave the hospital and now they're home and they feel very isolated. And so there's a disconnect and a feeling that they're not part of this healthcare system that they were so intimately involved with prior. So I thought this was a great idea. There's different models in regards to post-discharge transition, but the fact that the authors said that maybe case management is really what we're looking at and to help bridge that transition. This was another study that I thought was interesting. This was just looking at disparities and how these disparities affect patients remaining in the community after discharge for those patients who have sustained a TBI. So basically, they looked at patients who were residing in Texas. They looked at over 20,000 patients and they were looking at how they were doing in regards to residing in the community 30 days and then also 20 weeks after... I'm sorry, 90 days and then 20 weeks after their discharge. And so patients who were either female of Hispanic ethnicity, other race, having had a primary care provider, these patients were actually associated with having an increased likelihood of residing in the community. I love this notion of having a primary care provider because that's one of the things that we really try to harp on immediately when a patient comes in. And if they don't have a primary care provider, making sure that we're setting up with in the community. Patients who are older than 75, a prior nursing home residence, dual eligibility, prior TBI diagnosis and moderate to severe severity were associated with a decreased likelihood. And they also looked at 90-day readmission. And again, it's just highlighting the fact that there are such disparities in the way that we are approaching our healthcare and we really need to keep this in mind and address it better. So finally, this slide is really speaking to recent publication of a study that's gonna be coming out of Duke where they're looking at basically implementing a model, a transitional model, a brain injury education training and therapy to enhance recovery model. It's gonna be a single site, two arms randomized control study where they implement a bunch of interventions that I've outlined up here and to see if these interventions make a difference in satisfaction, see how the patients are doing overall in regards to their healthcare outcomes and how they are navigating the community outside of their brain injury. Thank you. Hi everybody. My name is Kirk Lercher. I'm a brain injury physiatrist at Kessler. I'm the director of outpatient TBI services over there. I'm gonna highlight a lot of things that sound similar to what Dr. Travato just sort of mentioned but more in terms of how we get them from inpatient rehab into the community. So some of the barriers are similar but some of the approaches that have been looked at are a little bit different so we'll go through it. So first, transitioning into the community really starts at the inpatient rehab level, right? So when the patients are there, we sort of set them up with referrals to the appropriate resources whether it be home care services or outpatient therapy services. We educate patients and caregivers. Usually that entails caregiver training where we're doing like hands-on training with the family and therapy teams to like make sure that they feel comfortable providing the care the patient's going to need as well as providing other resources and stuff for both the patient and the caregiver so that they're sort of well-prepared. Coordinate follow-up appointments, emphasizing which ones are the most important or what are the importance of going to these follow-up appointments and then obviously providing written instructions so it's not so overwhelming and information that...or leave it on them to sort of remember or write down. We give them the instructions, you know, in some kind of way to try to organize it for them. But then once they're home, the challenges that are ahead of them are many and they're very similar to the things you had mentioned in that poll everywhere. Transportation is a major one that comes up. A lot of times patients, you know, have limited resources for transportation. Insurance doesn't cover transportation for many of our patients and it becomes very difficult to get to these outpatient appointments and including therapy as well as doctor's appointments. Insurance coverage is obviously a major barrier both with regards to transportation coverage but also limited outpatient coverage for therapies. Sometimes the physician themselves can see them in the inpatient as consultants but then can't see them as an outpatient which throws a wrench in terms of trying to create a succinct plan for the patient to follow once they're in the community. Caregiver availability is a major barrier or challenge. A lot of times patients' family members take a time off while the patient's in the hospital, inpatient rehab, and by the time they get home they sort of either have exhausted their time off they could take from work or financially they're just it's a hard time. a barrier. Physical challenges, if the patient has physical impairments, spasticity, hemiplegia. I think have that in the community, that becomes a challenge, as well as cognitive and behavioral challenges. You know, if patients have cognitive impairments following their TBI, they might not be able to keep track or organized of their appointments and follow-ups and such, and schedules, and then they'll need that assistance. And similarly, behavioral challenges in terms of agitation or being overwhelmed in overstimulating environments might make also the challenge of getting them into community difficult on the caregivers that they're with. So there was a study that looked at healthcare access after TBI. It was a qualitative study of 44 brain injury survivors, and they had one caregiver involved as well as two focus groups, one in New York and one in Seattle. And the idea of this was to really describe what are barriers, facilitators, and suggestions for how to promote the healthcare access for these patients following their TBI. So barriers, again, one of the more common themes was provider barrier. What that meant was, specifically, there was comments that, like, the primary care doctors are not well-informed on TBI and the sequelae. Patients found that frustrating and it was hard to navigate when they didn't have the PCP to sort of rely on. There was financial and logistic barriers, again, insurance coverage or family members not being able to transport them to appointments or insurance not covering transportation was a major one. And then the cognitive impairments of the patient themselves not being able to kind of coordinate their schedule or keep on top of their appointments. Facilitators they suggested were communication, and not just communication between the healthcare provider and the patient or the family, but also communication between disciplines. It was stated that in these focus groups that they felt reassured when they knew that their doctor was and allow them to have a more meaningful interaction with the provider at any given appointment. Accommodations, so not just physical accommodations, but also accommodations for their cognitive impairments. that if they had increased time in their clinic visit or if the recommendations could be written down or recorded in some way, that was sort of described as a facilitator in helping them improve their access to healthcare. And strategies were identified as individual, like patient-specific strategies that they sort of developed, like writing down a schedule or utilizing external aids to sort of stay on top of their schedules and appointments and whatnot. And then suggestions they had were to provide provider education, so to get the doctors that they're going to be seeing more education for TBI-specific factors that they need to help them navigate in the healthcare system. A database of not just resources, but also specialists or physicians that specialize in brain injury or some of the sequelae that follow, such as neuro-ophthalmologists, neuropsychologists, et cetera, having a database that that was going to be helpful. And then accommodations for improved communication. What they specifically suggested was it would be of benefit if the provider would ask them, how would they want the communication related to them? Would it be beneficial to give it written down, record it, et cetera? And then finally, support groups. The participants in the study identified support groups as being helpful, and there's been other studies that have verified that support groups of other TBI survivors and their caregivers are helpful in, you know, that psychosocial kind of improvement that they have somebody that they can lean on that's going through the same process. So that has been described as a good suggestion to help facilitate access to healthcare. And then the overarching theme that was touched on earlier was case management has been looked at as a model to help ease transition. It has been shown to decrease 30-day rehospitalization, and it's largely driven by the Veterans Health Administration model of having that continuity with a case manager to sort of overseas and make sure that the patient is getting that access or having somebody sort of facilitate their access to their appointments and whatnot. So there is actually a study that was published, but the data is still... It has not yet been published, but it's called the BRITE trial or the Brain Injury Rehabilitation Improving the Transition Experience. It's a six-center study where they're enrolling 900 participants with moderate to severe TBI, and they're comparing the CARF standard rehab... Excuse me, Rehabilitation Discharge Plan, which is the standard of care that we're doing now, as I described earlier, you know, with the education of the patients, written instructions, coordination of the home care services or outpatient therapy versus what they call the Rehabilitation Transition Plan, which would then provide the patient 12 contacts by a case manager or a social worker over a six-month period. And those contacts are not just to the patient and caregiver, but those social workers or case managers are then able to then follow up with the healthcare providers these patients see. So if they go to... You know, they remind them, go to your appointment, then they go to the appointment, that social worker or case manager then can call that doctor and say, oh, so you saw so-and-so. You know, what were your recommendations treatment-wise or diagnostic tests, what have you, and then sort of help make sure that the patient follows through on those tests or that plan. And then ultimately, the patients and caregivers are surveyed. Healthcare utilization is going to be reviewed, how many doctor's visits do they have, how many ER visits, urgent care visits, all that was going to be looked at. And ultimately, the plan was to analyze the components that would be most effective, the components of that intervention having the case manager and try to inform that for, you know, not necessarily saying everybody needs a case manager. I mean, it would be ideal, but like to find out what elements of that would be most helpful in educating patients or setting them up for success to be more likely to be compliant with their follow-ups. So that's a promising study that hopefully will come out soon. So then there's community... So then community reintegration as a whole is benefited when we can get the patients to return to the prior level of functioning or as close to as possible. That helps prevent social isolation, helps promote structure and routine. As we know in brain injury, routinizing the patient's day is going to be helpful for the brain to recover. And then ultimately, getting them to have some kind of gainful employment will help improve their economic independence, which will have psychosocial benefits, as well as, you know, the obvious independence and other benefits that that would come with. However, despite the fact that we know this, 70% of TBI survivors are unable to fully reintegrate into the community. So what we know are facilitators for this is family involvement. So if you have an involved family that's taking an active role in ensuring the patients are going to have that access to care and get reintegrated, it correlates with a higher or improved psychosocial, physical, and social outcomes for the patient. But that being said, there is also evidence that there's an increased burden on the caregiver over time that takes on this responsibility. And that itself will result in stressors on the caregiver that then can have psychological, financial, and physical adverse effects on the caregiver. So it's a certain balance that we have to do when discharging patients and saying, you know, putting it on the family to be the caregivers. So there was a study that looked at the role of family in facilitating this reintegration. The idea was to describe the roles the family take on, determine challenges that the family and patient will come across, and identify supports that will help facilitate the family in being there for the patient. And the ultimate goal of the study was to develop specific recommendations to support families. This was an interview-based study where they asked open-ended questions with probes to help guide the discussion with the caregivers. And four main themes emerged. One was family motivation and end goals. So families that remain motivated to see their patients or their loved one get through their therapies and help optimize their ultimate end goal, which is to get them fully reintegrated as much as possible into the community. That was a major theme. The supportive roles that family members take on was a major theme. So they sort of advised that they took on a lot of different... They felt that they took on a lot of different roles or wore a lot of different hats. So they felt that they were researchers. They were doing a lot of their own independent research, looking into TBI, the sequelae, you know, what care providers they'll need, all that kind of stuff. They were advocates that they had to, you know, sort of advocate what their patients... Advocate for their loved one to make sure that they get, you know, what's recommended by their physicians. They felt like they play the role of case manager, having to fight with insurance companies to make sure that things are covered as much as possible. They were coaches that they had to make sure that, you know, they were there to sort of help inspire the patients to continue doing their exercises, you know, for home exercise in between outpatient therapy sessions. And they were supporters, both in the ADL independence as well as emotional support, sort of throughout the time that they've... since they've been discharged. Another theme were challenges, meeting the demands of their supportive roles. So that included prioritizing... They felt they were prioritizing the TBI survivor's needs over their own, and that had its own detrimental impact on the caregiver. There was a challenge in terms of adjusting to the disability and the impact on that change that that had in family dynamics. So specifically examples that they said were, you know, spouses that were taking on the caregiver role for their spouse, and that spouse no longer is really in like helping in childcare, and that added stressors on that family dynamic. That was an example they gave. And then there was a dissatisfaction with healthcare services, both access to it as well as some of the other issues we've mentioned in terms of having access to healthcare professionals that were experienced in TBI and sequelae. And then finally, they advised of support that they would want. So included, they wanted to be involved in the care. So they liked having family meetings and being involved when their loved one had an appointment to be able to, you know, be able to sort of be involved in that conversation in terms of what the care plan is. They wanted support. They wanted validation of their own frustrations in being a caregiver, and then ultimately they wanted education and resources for how to optimally help their loved one, you know, fully reintegrate into the community. So that was sort of the conclusion on that study was to sort of see, like, these are things that would help facilitate these... Help reassure, facilitate, and get these family members to be optimized as caregivers to then ultimately reintegrate the patient into the community. So those are the... That's our background. And then to sort of emphasize some of these issues, we have some case studies or case discussions that we were going to each bring up. So the first one I'll talk about is this case. So it illustrates some of the issues that we've been touching on. So this is a 78-year-old woman. She lives alone in a house with stairs both to enter as well as to get to her bedroom. She's independent, no assistive devices, and she drives. So she's, you know, drives and is fully independent in getting to her appointments and such. So she unfortunately fell, sustained a TBI with rib fractures and a distal radius fracture. Her hospital course was complicated by pain and delirium. She's currently non-weight-bearing in the upper limb that had the fracture. Her cognitive and communication status is normalized. However, she now has... Her diabetes medications were now transitioned from an oral regimen to insulin while in the hospital, and that's what she's going to be going home on. Her discharge plan, she wants to go home. Family is nearby, supportive, but they're not able to provide care, and they've advised that their preference is obviously for this patient to go home, but with the idea that she go back to the independent living she was at. So it's a very familiar case I'm sure everybody's dealt with. So I have a poll here. Which do you think will be the easiest to implement? Teaching her how to manage her insulin and all other medications, setting up transportation to follow-up appointments using local adapted mobility services, putting in a temporary stair glide, or none of the above because all will be hard to do? This case really illustrates a very standard case that we see a lot. We have a lot of patients that are aging and are independent, and family sort of needs their loved one to stay independent, even though they're aging, because they have their own lives and responsibilities. So it's a major challenge that we face in inpatient rehab. So yeah. So this case highlights medical comorbidities, so medication management. So in this case, the patient is now going to need insulin to manage their diabetes, with a loss of the limb. So now that's going to require a family or some care provider to help in monitoring their blood sugars and administering the insulin. Transportation is going to be a barrier. She was an independent driver, but now obviously she can't with the one arm. She needs to manage her weight-bearing restrictions, so someone needs to be there to help make sure she doesn't, you know, bear weight and cause more injury to the already fractured arm. There's obviously a social role change with loss of her independence, and that's going to have its own sort of psychological impact on the patient. Home adaptive equipment, or home adaptations and equipment, you know, sometimes there's limitations on what can be done. Sometimes, you know, depending on their living situation, they might not be able to make certain adaptations. Equipment may not fit through, as was mentioned earlier, through doorways or through hallways in the patient's home. So that may be a challenge as well. Follow-up care, she has to have these follow-ups, you know, in order to get the weight-bearing restrictions lifted. She has to see an orthopedist and then outpatient therapy, so that's going to be a challenge. So this is a 21-year-old gentleman. He's a junior in college. He went biking without a helmet and got hit by a car. He sustained a severe TBI with fractures of the femur, tibia, fibula, and thoracic spine. His course was complicated by multiple neurosurgical and orthopedic procedures. He needs a TLSO for two more months. He has some memory impairment, impulsivity, and other higher-order cognitive impairments. And the plan is for him to go home with his family, with his parents. So what's your biggest discharge planning concern based on this case? Definitely, they're all concerning. Some of them a little bit more than others, which I think that's what the results were showing us. So really what this case is supposed to try to highlight are what the potential issues are and how do we address them. And again, this is the education, the reassurance, the provision of resources in the community. The stuff that takes a lot of time that I think oftentimes are the things that end up getting skipped, not because we want to skip them, but because of time constraints. So it's really nice when there's protocols, I think, in place for these things to get done, almost like checklists that need to be completed before the patient leaves the hospital. It makes us accountable and it's really good to provide all of this before they leave. So caregiver abilities, caregiver burden. We've seen this a lot in our caregivers when they come in to take care of their loved ones and they have an idea of how they're doing, but then you have them go through caregiver training and they say, oh my goodness, this is a lot more than I was expecting. This is a lot of responsibility. A lot of times people are spooked and they don't end up wanting to take the patient home. Obviously this is their child, so the parents said that they would be able to take the patient home, but kind of prepping them, right? Because they're in this adrenaline rush type of state that they've been in obviously since probably their son was in this accident, but educating them about caregiver burden, letting them know what the signs and the symptoms are, making them aware that it's okay. This is to be expected and this is what you can do about it. This is where I feel like a lot of support groups are also really important and a lot of that went away during COVID, but they're back up and they're virtual and I think that they can be really helpful for caregivers. Driving, this is something I'm, I think, asked about every single day and when can I go back to driving, especially depending upon the geographical location, right? If you need your car to be able to get around and to carry out your daily activities, it's a huge concern. It's usually the first thing, like I said, that I'm asked about. So I mean, I'm curious how people approach this. I know that there's no necessarily standard way of approaching it. At my institution, we have like a simulation driving test that they can go to, but that's usually three to six months after they've been discharged from the home. So there is this gap when we really don't, you know, we're not necessarily addressing this and then the transportation issues come back up. So there seems to be this gap in regards to driving. And a lot of people think that, hey, I'll be fine. I'll just get in the car and I'll be totally fine, but they don't recognize how much cognitive ability actually does go into driving. Return to school. And this is also something I feel like is a big question that happens. And you know, either times, you know, sometimes parents will even say like, I don't care. I want them to go back to school. They need to finish. They need to finish their college degree and move on from this. And it's almost that mind frame again where TBI is a singular event as opposed to a chronic disease. So that education sometimes is quite challenging, but necessary. And I think this is where it's really nice if you have neuropsychology available to have them come and consult on the inpatient basis and then transition them to the outpatient basis. And to really utilize objective findings through batteries of tests to kind of have to prove that, yes, there are deficits here and we will work on them. But we want to be able to set our patients up for success. We don't want them to go back into an educational environment and not do well. So that's very discouraging and that may end up to further sequelae that may not be thought of initially. Social roles change, right? Loss of independence. 22 years old, my gosh, what were we doing when we were 22, right? And so, you know, where maybe they would be able to come to a conference or they would be able to, you know, hang out with their friends and socialize or maybe they have a job, not going to be able to do that. They're going to have to change their social role. Their main caregivers or caretakers are going to be their parents, right? So if you think about it, it's a juxtaposition to the type of life that they likely were leading prior to that accident. In regards to sexual health and intimacy issues, you know, I feel like the brain injury community, we're getting better at talking about sex. However, it's usually something that we get more used to with the spinal cord injury population. And it's that, to me, is very normal to talk about this topic with a patient who has sustained a spinal cord injury. But when it comes to brain injury, that is something too that we have to be addressing. Does the patient have capacity to engage in sex? That's something that's been coming up actually quite recently with my younger patients as well or for the older patients who, you know, have loved ones that don't really understand that the cognitive component has changed and that you have to really be an advocate for your patient and what they want. Also in the same, in regards to follow-up care, making sure that these younger patients who may or may not have a primary care provider, making sure that they're set up with someone in the community. And then also the financial implications. You know, 22 is that age where maybe, you know, after college he was being set up and he was going to have a great job. But looking at insurance coverage, COBRAs from patients or from their parents, I should say, and just the overall financial burden that this will place on the family is something that needs to be thought of and addressed. I know we're going through a lot here and we don't have all the answers, but I think it's just great to talk about these issues and to just see if there's any way that we can help with some of the models or ideas that we've been reviewing with you. So this case, those of us in the VA or similar systems will recognize say someone who's around 40 had served in some conflict zones, at least one, probably many blast exposures. Then about three years ago after their service was complete, were in a motorcycle crash, real severe frontal injury, other injuries, already had some low back pain, that's worse. So now they're at home, they went home after say five months, who knows, they have two little kids and their wife and now they're three years past that so the kids are in school and they're still home with their wife and now the wife calls you because we have this wellness program and the wife calls the nurse, case manager, and says he's very different. He's having his behavioral issues are worse, he's being very emotional, we were just at a party and he yelled at the kids in front of everybody and what do we do? I think this is something that we deal with a lot because people do have the ability to call and then trying to figure out or maybe they came to their appointment or primary care calls and says, wow, this person is having seizures or whatever the issues are in this kind of program, now how do we address those issues? So here are some, and I'm not being flippant, these are just some questions. What is the next thing we would do? And again, we're three months plus post-injury, they're having more behavioral issues. And I know not everyone has access to the same kinds of resources, right? So then we wonder, should we get more testing, should we change meds, should we check labs, do we need more imaging? And all of those things are true, but then there's also this question of now we're following this as a chronic model and say after getting those tests and we know there's not something acute going on, how do we help this family, right? How do we help this family and this person and this community in a way that maybe a med isn't going to be the answer or more imaging isn't going to be the answer? So I really appreciate those answers. Maybe we're going to need to do something in a family support program or we can call Wounded Warriors or some other resource and say, do you have anything coming up that a family could go to? And the reason we had acquired therapy on there is because we've had a number of families go to these kind of places for a day or two or three and they come back as a much more cohesive unit and it's hard to understand why did that work when all the med changes and all the testing and we've done hasn't worked? But I think there is something to this engagement, this participation, this getting people doing activity, getting them moving, getting them in relationships that maybe weren't what they thought they were going to be prior to the injury, but now are what they are and maybe there's a way to help them have engagement, have participation in some way that's meaningful and positive. Of course, we do have this interdisciplinary team and it's kind of a way that we can assess when there is a change like this and maybe looking at some of the social issues that might be going on that precipitated that change, but then also trying to figure out, make sure it's not a medical issue, make sure it's not another issue going on and then how do we help with the resources that we have and the other providers who are involved. So that's kind of a caring for them over time kind of case and again, one that I'm sure you see a lot and then trying to figure out the difference between dealing just with that one event, right? Now the second one event, now they're having emotional changes or looking at it as an issue over time. So appreciate that very much. So just in conclusion, I think we've shown you some of the literature, we've talked about some models, we've talked about some reasons why we would think TBI is a chronic illness makes sense as a paradigm and some of the ideal components of ongoing care and I know we've repeated them again and again because they seem important both in our clinical practices and also in the literature and in the responses that you were generous enough to share with us. Being able to access care, being able to have a continuum of services over time, maybe telehealth if that's helpful, if that's something that people can access more easily, case management, having some way to coordinate with other departments and providers because nobody's saying there's enough PM&R providers to do this work. So how are we going to coordinate, provide the expertise but letting the primary care team, the neurologist, the mental health providers do their stuff as well as the, you know, because they're incredible at that and then access therapies, equipment and other services over time. So looking at different systems, looking at different ideas that you guys have and that's what some ideas that we had to start with. So I don't really know how much time there's left but if anyone did have any questions or ideas we'd be happy to, grateful to hear them and the next couple of slides are references and you have all of those so thank you. Hi I'm Andy Morpurgo. Hi, my name is Steve. I work with the Permanente Medical Group in Seattle. top unmet need for healthcare providers was knowing what resources are available. Top unmet need for caregivers and family members of loved ones was knowing what resources are available. And so my question for you, kind of two parts, one is are you aware, so the state TBI advisory board is trying to create a comprehensive resource. So, what I direct my patients to is, I'm the medical director of the model system at our institution, Kessler Foundation. I usually advise families and patients to go to the TBI model system's website. Nationwide, there's free access to open access to publications on there, as well as what's called fact sheets. And the fact sheets have... They're summations of various topics, like whether it's sexuality, driving, vision issues, psychosol... I mean, there's a ton of them. And they're written at a level that's... It's meant to be digestible by caregivers and families. It's not necessarily resources, per se, but in and of itself, it's sort of a resource, because it's education. The problem is still like, and this is an ongoing challenge, is finding people that they can go to, or physical resources. But at least this is something that's educational, and it's a help kind of guide. That's usually what I recommend. The other place that I think, for the second part of your question, is the Brain Injury Association. So, they have a national presence. They're really advocating hard. They have great connections with... I'm Jess. I'm currently a brain injury medicine fellow at NYU. Something I wanted to know was, I guess like thinking back on my own training, which is still ongoing but being a resident was not too long ago, do you have any recommendations as to how we might be able to approach new rehab residents in educating them like for how to think of when they're on their inpatient rotations of brain injury as a chronic disease? Because I feel like a lot of them are switching from a medicine or a transitional year or a surgical year where maybe they thought of like medicine as a chronic disease but kind of in the internal medicine realm. And by the time they come to rehab like they're absorbing so many things, learning new scales when they're interpreting therapy notes. But I don't know and it may not be a universal thing, I don't know how much is necessarily thought like put into thought of approaching their rehab patients that way if that makes sense. doing the consult, then seeing how they progress, and acknowledging also in the outpatient setting, seeing what the issues are with community reintegration or seeing it from a different models perspective. And I think it really is just that education standpoint and you know having them somehow under Try to do everything we can to optimize their cognition. I think getting the updated testing or but I don't know that we I personally feel like this is where technology is really, really helpful and so compensatory strategies, right? So using alarm clocks, you know, using AI in ways to make reminders for patients, for the caregivers too, you know. Yeah, and I would think, too, like, I don't mean to cut you off, but like in the VA, at least, and I'm sure other health settings, when people have heart failure, right, we send them home with scales and blood pressure coughs, and they automatically take their blood pressure cough. The blood pressure is transmitted to a nurse every day, right? Maybe there are things we can do like that if we start thinking about brain injury as that way. Maybe a phone call every day or some kind of reminders like you said, so it's an interesting point that you make. Yeah. Yeah. Right. Yeah. That's a great idea. Thank you. All right. Thanks. Well, thank you so much. We really appreciate all your participation and ideas, work.

traumatic brain injury

chronic disease

patient outcomes

cognitive decline

caregiver support

medical follow-up

VA initiatives

CMS changes

case management

family involvement

technology in TBI

healthcare education