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Member May 2024: The Field of Limb Loss and Preser ...
Member May: The Field of Limb Loss and Preservatio ...
Member May: The Field of Limb Loss and Preservation Rehabilitation - Current Landscape and Future Directions (1.25 CME)
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Welcome to this first session for the LimbLoss member community. I will start sharing my screen in just a minute. But I wanted to start with saying that this is a very informal presentation. It's not even though it's a CME presentation. The intention is for all of us who work with LimbLoss and LimbDifference to come together and spend some time chatting about what we feel our field is about, what we feel the challenges are, what we feel the opportunities are, and how we can do this all together. So with that, I'm going to go ahead and start sharing the topic for the day, LimbLoss and Preservation Rehabilitation. And as I mentioned, seeking your thoughts to move the field forward. I'm Pratik Grover. I'm the Director of LimbLoss and Preservation Rehabilitation and Associate Professor of Physical Medicine and Rehab and Biomedical Engineering at Penn State Health. And my co-presenter today is Vinay Vinodia. Vinay, you want to talk a little bit about yourself as well, please? Sure. Thank you, Dr. Grover. I'm the Medical Director of Amputee and LimbLoss Rehabilitation at Thierry-Bavoy-O'Herman and Assistant Professor of PM&R at the University of Texas in Houston. And I'm a former board-certified prosthetist. All right. Moving on to disclosures, I have one financial conflict of interest. So I'm the Medical Director and Chair of the Scientific and Medical Advisory Committee for the Amputee Coalition starting this year. Non-financial conflicts of interest relate to limb loss and preservation rehabilitation, where I'm the chairperson for this group, a vision setting and programmatic reviewer for the Orthotics and Prosthetics Research Program, Department of Defense Congressionally Directed Medical Research Programs, and the past chair for the LimbCare Networking Group at the American Congress of Rehab Medicine. Disclosures, non-financial conflicts related to rehab sites, an examiner for the oral votes for the American Board of Physical Medicine and Rehab, co-chair for the Policy and Legislation Committee at the American Congress of Rehab Medicine, and member of a few different committees at the American Academy of Physical Medicine and Rehab. I have no disclosures. Fantastic. So before we move forward, did we want to do introductions for the other folks on this call? I see a few people who I know. Should I pick on some people? Oh, I hear a very clear no for introductions here. All right. Let me go back to sharing on that case. Remember, this is intended to be a discussion as a member of community. So the hope is that we are all able to chat, talk, and figure out what we want to do as a group so that we can make this group really useful. And it seems we are having technical issues. We can see your screen, Dr. Grover. Oh, okay. It's on the disclosures. I wonder why I can't see it. Give me one second. Dr. Linaudio, do you want to carry on with talking about the mission and the vision of the group that we have so far while I'm able to sort this out? Sure. I'm unable to get to that slide. Okay. I think I have it. All right. So talking about the mission, what we feel this should be is a platform for members to share experiences, opportunities, wins, and difficult cases from their work with people with limb loss and limb difference and to facilitate collaborative opportunities. And that is the intent of the meeting today. The vision, which is really what we see in the future, is to collaboratively define the field of limb loss and preservation rehabilitation, establish the vital role of physical medicine and rehab in leading this field forward, and disseminate this position to the medical and limb loss community at large. Any thoughts about the mission and the vision? You know, I would say that one of the things is that, you know, having a mission like this and a vision like this, in the end, it brings our field together, but also the patients themselves benefit from, you know, us having something established like this, where we can collaborate with one another, discuss cases, what's worked and what's not. I think the patients at the end definitely benefit from that as well. Anyone else have any thoughts? Do you have any interest in something to facilitate collaborative research? The answer to that is yes. So I think there are several projects that can be conducted together. Some of them initially to begin with could be things like surveys, which are some of the thoughts that Vinay and I have discussed. There are also possibilities, I believe, for research projects that may be happening at one site as pilots that could be extended to multi-site collaborations. And then, of course, other people on this call, I'm sure, may have projects that they might want to collaborate for. Vinay, thoughts? Yeah, you know, another thing is even presentations at, you know, various national events. And I'm just thinking about how, you know, ASIA integration is a big thing right now. More and more people are getting into it. I'm actually collaborating with some individuals from the VA. And we're going to be speaking about the approach to ASIA integration rehab from a kind of a VA standpoint versus civilian and, you know, an educational institution standpoint, how we do things differently, you know, what our outcomes are. And I think it's really interesting, you know, to come together and speak about these things because all of us do things differently. And yet we're treating the same type of patients. So, you know, there's a lot to learn from one another. There was a message in the chat that someone mentioned that it would be nice to be more directly inclusive of the pediatric population instead of people with limb loss, change it to children and adults. Yeah, I completely agree. Hi, Phoebe, how are you doing? Nice to see you again. Yes, I agree. I think it is really important for us to think about not just limb loss, but also limb difference. I agree, it is not captured in the title, which is the reason for this call, right? We are all here to discuss what we think we can do as part of this group to be able to move this field forward. One of the things you had mentioned earlier, Dr. Grover, is like something like this hasn't been done before, really. So I do think the limb loss community of providers, healthcare providers like ourselves that care for individuals with limb loss, it is growing. So this is kind of the first time something like this is being done. So we are definitely looking for everyone's input. If you don't feel comfortable unmuting, even sharing in the chat, but definitely please share so that we can come up with ideas together. All right. I think since we are not hearing much else, we will move on to the objectives. There are three major objectives, and I was hoping to get a lot more audience feedback. The first is to define the scope of our field, limb loss and preservation rehab. I think we already heard the fact that we need to be including limb differences in this as well. The second objective is to consider roles and opportunities for physical medicine and rehab and limb loss and preservation rehabilitation. And then the third one is to define aspirations and measures of success for limb loss and preservation rehab. So with that, I'm going to move on to the very first one, and there's a reason I'm staying on this PowerPoint and not putting it in the slide presentation mode. That's because I would like to take notes if people have feedback, which we can send out as a summary and then determine what the group can do in the next year and a half to two years. So thinking about the scope of this field, there are different, using the socioecological lens, one can conceptualize this field at different levels. So if you think at the diagnosis level, we have limb difference, we have limb loss, excuse me, but I think one of the things that we don't always think about, I know I didn't when I started out, was thinking about the threatened limb. And that is the limb preservation phase. And of course, there are a lot more surgical disciplines that are involved in this phase, but working at Penn State, having worked at Wash U in the past, I find that there is a lot of eagerness from our surgical colleagues to collaborate on the limb preservation phase as well. They are often looking for advice on the kind of rehabilitation that would be appropriate. And we know that functional status changes once a person has their limb in the threatened phase. So the question I had here was, are there any other diagnoses that we are missing? When we start thinking about this field of limb loss and preservation rehab. I'm glad that you did add retin-limb in there because that does include a lot of things. It includes both individuals with a dysvascular disease that may be at risk for further amputation, includes oncological patients as well that due to a cancer may be considering amputation. Another thing I was thinking was limb salvage. You know, we see a lot of trauma patients in my institution. And so we get a lot of patients that go through that process with surgery and go through limb salvage but then down the road, because of either pain, discomfort or limited function, they decide to have an amputation of their limb. So maybe that's one. Yeah, thank you for sharing that. Other folks on the call? Based upon your experience, have you seen other diagnoses that may not fit into neatly into these categories? Someone mentioned infection related retin-limb. That's a good one. And then John V mentioned risk of earlier osteoporosis on the amputated side and risk for further injury due to falls. Okay, so that would fall under limb loss and complications. That is excellent. Other thoughts about diagnosis before we move on to the care team, which now on the socioecological level that we are basically moving from the patient of the center to the provider level. Okay, let's talk about the care team. So in the care team, we talk about physicians and then we are looking at the physicians that provide care in this field of limb loss and preservation. Physical medicine and rehab obviously is there and we are very under-recognized based upon my interaction with different health systems. And there is more recognition of physical medicine than we have within the VA system as opposed to academic systems and non-academic systems. Other specialties that often are part of this are gonna be surgeons. So I work with podiatrists, plastic surgery, orthopedic surgery, vascular surgery, trauma and emergency general surgery as the five main departments. We also include other physicians, pain management. We would include primary care physicians as well, although they become difficult to make part of that team because it becomes very heterogeneous. But essentially they are part of this continuum. Any other physicians I may be missing? Wound care. If they're diabetic, they may need an internist or an endocrinologist. Endocrinologist, wound care. Mental health. Oh, thank you for that. I really appreciate that. Yeah, mental health I think is probably one of the most unavailable areas is the word I will use. Even though we want that for our patients, we are just not able to get access to mental health. Right, I think that's pretty good. Moving on to non-physician clinicians, this really is a therapy colleagues, physical therapy, occupational therapy, speech therapy, in case we have co-existing challenges with speech swallowing, cognition, as we can see sometimes with vascular dementia or with trauma and so on. Also, I include in this orthotist and prosthetists. I know there is a difference in appreciation as to whether they're clinicians or non-clinicians. I seriously consider them clinicians because they provide very valuable clinical service. Other clinicians that I may be missing? Nursing. Thank you for that. Others? Dr. Shapiro mentioned workers' comp case managers for injured workers. Fantastic. And then under non-clinicians, when I start thinking about non-clinicians, the main folks that I consider non-clinicians would be peer mentors. But are there others that we are missing? Family. Family and caregivers, okay. Other non-clinicians that we think will be part of the team? So driving rehabilitation, that would, I think, again, squarely fall under non-physician clinicians, driving rehab, recreational rehab, and things of that nature. So more community rehab resources. You may be able to add priests or religious institution. Some people find care from that aspect as well. Yeah, spiritual support. Yeah. Any final thoughts before we move on to the next socioecological level, which in this case is gonna be healthcare organizations, our employers? Okay, so moving on to healthcare organizations, the major settings of care that I think about when I am seeing patients, and I try and see them in all the settings, is acute care, the main hospitals, post-acute care, which now is a very wide spectrum. So we are really looking at inpatient rehab, we are looking at LTACs, we are looking at skilled nursing facilities. And then community care is really when they are coming to our clinic or they are going to an O&P clinic or they are going to a therapy clinic and so on. Is there anything that I'm missing there? Or does anybody here work across all these settings when they're seeing patients with limb loss? We have a yes in the in the group chat. You know, one of the things I was thinking, as I know there are some individuals here and myself included, have done some international work. So that may be something that could be included here. International systems of care may look different. That's a great point. Of the folks who have worked in all of these settings, which one do you find most challenging to get resources for your patients for? So, for example, if you're working in acute care and post-acute care, do you find it more difficult to get people coming into IRF because of insurance issues? Or if you're seeing them in IRF and then you're seeing them in clinic, do you find it more challenging to get them a prosthetic device, for example? So is there any particular setting where you're working where you find it is more challenging to work and get your patients the resources? I think they all have their challenges, depending on their insurance also. So that's a great point. Sometimes the worst is community care because they don't live near a therapy center or prosthesis or orthotist. So more geographic variation, essentially. Yeah, especially in the rural areas. Yeah. Other folks, other thoughts? Dr. Shapiro mentioned acute care is pretty bad. They don't really know how to provide appropriate post-op care. I would agree with that. That's what we find as well. I've been at Penn State for about a year and they didn't really have a dedicated limb loss specialist until I came along for at least a few years. And my initial six months was spent just talking with surgeons, talking with APPs to try and educate them on what is appropriate care to take patients across that continuum of care. There were people who were getting discharged home with no home health services and so on. So completely agree. Can be a very challenging setting if PMNR is not a part of that setting. So it seems like post-acute care and patient rehab seems to be the easiest relatively. Once patients are there, we are able to get them the DME that they need. We are able to coordinate the services that they need, probably because it is the most controlled environment from our perspective as physical medicine and rehab specialists. And then Dr. Vinodia, you mentioned international systems of care. What has your experience been there? We've done, or I was part of a group that did some work in Jamaica where we were helping to educate rehab healthcare providers in the country of Jamaica on how to take care of their, they only have one rehab hospital in the whole country. So we were helping to educate them. And also we provided them with a 3D printer actually, and taught them how to use it. And we were able to actually develop the first, in the country, the first 3D printed myoelectric prosthesis for a patient. But I think, you know, there's definitely needs. The most difficult thing I think is follow-up care for these patients. I know Dr. Shapiro has done some international work as well, but yeah, I think follow-up care is, you know, one of the most difficult things and then resources, getting them the resources that they need. Yeah, I would agree. So about four or five years ago, pre-COVID times, I did a survey in India, which is where I'm from. I traveled across India, I went to a few different centers. There are 17 programs for physical medicine and rehab in India, and that's it, in a country that size. And limb loss is not really a specialty. So going and surveying, looking at some of the premier institutes, like the All-Indian Institute of Medical Sciences, going and talking to the founder of J. Puriford, what we really found, and I presented on this at ACRM back in 2018, I think, is that there are a lot of barriers. And you can provide a prosthetic device, but compliance with using a prosthetic device and things of that nature, residual limb care, follow-up to Dr. Vinodia's point, those are the things that really suffer. There are several international organizations, there are several organizations that will actually take limbs, like Limbs for Life, and take them internationally. I had a patient from Afghanistan who wanted to go to India, and he had a limb that was and take them internationally. I had a patient from Afghanistan who wanted to get that done for a friend of his, it was a little bit of a challenge to get done. But there are organizations that will do that. I think it's the follow-up care that I think is really, really challenging. All right, so that's healthcare organization. And then moving on to the last level. So we have gone from patient level to provider level to healthcare organization level, and now we are looking at the biggest range. So we are looking at this huge spectrum, which is systems and advocacy, which I think is where international systems of care actually may belong better. But within the United States, the systems of care that we have, there are two very distinct systems of care, based upon my experience with patients, and of course, other people on this call can comment on that as well. But folks who have access to the veteran systems of care, their care looks very different compared to everybody else. And they have a dedicated formal system of care, a four-level system of care, which goes all the way from a point of contact to regional amputation centers, where they have the highest level research, and a couple of different levels in between. So it's a hierarchical system that can allow a person to move through, even if they are geographically disadvantaged. As long as they know where to get to, they are able to access this. And they're able to get access to devices that we don't get access to for people who don't have access to this kind of insurance. So one distinction within the United States is veteran system versus non-veteran system. The other place where there is a big role that physical medicine and rehab plays, I feel, is patient advocacy organizations like the Amputee Coalition, and then professional organizations like this one, where we as a group can come together, can think about what is actually meaningful, and can put our thought and force behind moving synergistically both the field forward as well as our specialty forward, which impacts patient outcomes at the end of the day. And then international systems of care, which Vinay talked about, I think is the third parameter to consider. So looking through and trying to understand systems of care, I was very curious to try and find out what prosthetic rehabilitation looks like between our system and other systems. So I've been working in the background on a review where preliminary data indicates that international systems of care, which are coordinated, some of them are more socialized medicine, a person can go from a surgery to completing prosthetic rehabilitation in as little as 30 to 40 days. In the data that I have analyzed and some of the research that I have published, we are looking more at five to six months. So I want to stop there and see what people's thoughts are regarding systems and advocacy. Hi, this is Melissa Tinney. Full disclosure, I am primarily practicing out of the VA system, which is obviously a very resource robust system to be in. But I've also practiced outside with our University of Michigan. So I've seen some of the challenges that you're talking about as far as not having resources or insurance coverage to get what you need for your patient. One, you talked about our colleagues across our professional societies advocating for resources. And AOPA has done a really good job in lobbying hard for insurance coverage state by state. They have a campaign called So Everyone Can Move. And it's changing state by state to get more access for coverage for activity specific prostheses. So if you look at that and follow the legislation, they're really, it's growing. So each year, they keep adding more states. So it's slow going, but it's something you can look at and see if it affects your practice. But ultimately, if you're one of the states that's already been passed, that's going to change how you're able to practice, which is tremendous. So I think we should also, as AAP Menara, be paying attention to that campaign and maybe even collaborating because it's going to be a huge game changer for people. So I just thought I'd mention that as far as the advocacy. There's also a AAA study act through the Amputee Coalition of America that was supposed to do an examination, bipartisan legislation, to look at both all the different models of care for coverage for devices. But I don't know if anything's actually happened with it, if it stalled in a committee or something like that. But that was on the Amputee Coalition of America's website. Yeah. Thank you for sharing that. So Everybody Can Move is terrific. I think it's been passed in, like you said, seven or eight states. There are about five or six states, maybe more, where it's pending at this point in time. Yes. And yeah, Phoebe said, so she said the 28 by 28 campaign, trying to get at least 28 states by LA 28, which would be amazing. Yeah, that would be great. I completely agree. And for folks who don't know much about it, recreational devices, that's the big thing. It really allows people. It started with So Kids Can Move and now has extended to everybody. So that is fantastic. And then talking about the GAO study. Actually, Dr. Marlies Gonzalez Fernandez and I from the AAPMR spoke to folks, the congressional folks, for that second thing that you mentioned, where they wanted to know what the status was currently for following laws, where the challenges lay with the role of PM&R was and so on. I think that was about a year ago that we did that. I think they are working on releasing that report. They still haven't got around to completely doing it, I believe, but I think they are at the final stages. So hopefully, something good comes off that. Another exciting thing on advocacy is going from K3 to K2 for microprocessing. And I think that is a really big one as well, where microprocessors have always been recommended or advocated or allowed for K3 ambulators, but we recognize there are significant benefits for K2 ambulators as well, as long as the patient selection is appropriate. So obviously, there are contraindications, but for a large majority of K2, there is the benefit of stumbled recovery, and I think there is a significant benefit of cost savings as well, because sometimes what we are doing in the academic non-VHA systems is going for a K2 need, because we know insurance will not approve a K3. So it becomes a bit of a challenge to prove to the insurance company that they can actually do activities with a K2 before they can justify a K3. So there are cost savings if you can go directly to a microprocessor. So some exciting things there. Other things other folks have to share about systems and advocacy. Anything in the world of limb difference for a pediatric poly exam? I mean, just increased coverage of anything myoelectric, including microprocessor needs, like both of those just more expensive systems are really hard to get buy-in from insurance to get covered in the younger kids. So it's a frustrating thing that we're up against. Not, I mean, and obviously, any kind of sport-related processes that are considered to be a luxury. So hopefully, with the So Everybody Can Move legislation, we'll get some movement there. All right. So putting all of this together using a socioecological lens, do we think we have a comprehensive definition of our field? Or are there any dimensions that we are missing? Under physicians, I think you should put PM&R and surgery. I mean, I was looking at that and went, wait a minute. We're not there. Thank you for doing that. I was adding the ones I'd forgotten, but I'll add all of these. Yes, absolutely. Interestingly, we have anesthesiology that does a lot of acute pain management, as well as some chronic pain management. So in the prior system at Wash U, it was not that much. But at Penn State, they play a pretty major role as well. Yeah, that's a good point on the anesthesia pain management side. I'm not spelling it directly. All right. So yeah, going back to the question, do we think that this would be a good definition for the scope of our field of limb loss and preservation? I guess it should be limb loss, difference, and preservation rehabilitation. Do we feel comfortable taking ownership of this field, I guess, is the question. Because what would be great would be if we can actually get some form of a position statement together to start talking about what this field actually means. It is so nebulous. In my experience working with a few different health systems, it is so nebulous. And sometimes there are just not enough patient volumes that some of us actually end up doing or working with different patient populations that we do not get enough time to dedicate to this particular field. But we recognize that it is a really important field when we are looking at just relative numbers of people living with limb loss. It can far exceed some of the other populations that we work with. And of course, they deserve equally good care, especially with specialists from this field. I think it is an important conversation to have. And I am glad we are speaking about this. Obviously, I am biased. But I do think individuals do better when there is a PM&R doctor involved, especially one that is familiar with limb loss and limb difference and the rehab process for individuals that have limb loss or limb difference. And I think our care starts, it can start preoperatively with pre-op consults. We do a lot of pre-op consults where I am. Just give, when they are possible, we give the patients an idea of what life will be like as an individual with limb loss. We connect them with peers and connect them with support groups from the beginning. So I think preoperative care and then obviously postoperative care, just caring for the limb wound care, appropriate types of compression on the residual limb postoperatively, and then getting into the pre-prosthetic training and all of that. And coping with limb loss should start day one, where we're definitely looking at this and assisting how we can. And then, of course, the prescriptions for prosthetics and DME, which ends up being a lifelong thing for the patient. I think also we do a better part, we do a better job of justifying the need of these things. A lot of times surgeons don't have time to put things in their note. But I think, especially with PM&R focusing on quality of life and function, it's definitely something that falls into our lab. Yeah, thank you for sharing that. That is actually a great segue to the next object, which is consider the rules and opportunities for PM&R. So working, I have tried to make this as comprehensive as possible, which means that it depends upon the missions where we work at. If we are working in an academic environment, the number of missions expands suddenly. So it's clinical, but it's also teaching. I feel leadership, we all do it in PM&R, doesn't matter what setting. Advocacy, I feel like a lot of us do this formally. Most of us or all of us do this informally at any given point in time. And then research. But are there any other domains that we can think of? Besides clinical, teaching, leadership, advocacy, and research missions? What about outreach? Like working with community organizations or like tomorrow I'm headed to Camp No Limits up in the mountains. So that doesn't necessarily fit into any of the other boxes. Well, that's a great point. So I tend to put it in advocacy, but I can see where they are different. So that makes complete sense. I can always add another one if you need to. Are we looking at any others? I guess there's entrepreneurship come into this at all. I guess in other words, are there physiatrists that may be working directly with manufacturers or are involved in product development and things of that nature, maybe through research? I guess in other words, are there physiatrists that may be working directly with manufacturers or are involved Vinay, thoughts? Dr. Shapiro just mentioned would consider adding a role in prevention. And would that fall under clinical or are we thinking of different forms of prevention? It's easier just to unmute than to type, but I think there are some involved, especially internationally, but nationally as well in like limb loss prevention programs from a public health standpoint. So some of it is clinical, of course, like when we have a patient who's at risk for an amputation, but others may be involved in things like smoking cessation or injury prevention. That's a great point. So that would be a little different than outreach because outreach would be more patient focused. And I think that the piece of the pie you have on teaching, you know, that kind of falls into some different categories as well, where there's teaching as in teaching residents or fellows in limb loss, also, you know, doing in-services for those that are caring for individuals and patients in our field, such as doing in-services for the nurses, for physical therapists, things like that. But then there's also the educational aspect, I think Dr. Shapiro touched on, for patients, you know, which is a little different, but I think could fall into a few of these categories. And when the surgeon has never been exposed to a PM&R doctor because their medical school didn't have a residency program, we need to educate the surgeons about our role in taking care of these patients and that we are happy to work with the patient regarding their prosthesis instead of just having a surgeon write a prescription that says below knee prosthesis. Agree. Yeah, it is interesting. When I've been working with surgeons here, I find different surgical techniques. So I actually attended a grand rounds here where I think they were presenting on osseointegration and there was a question around patient selection. And one of my responses to them was that it depends upon surgical technique. So what is interesting is that I've since had surgeons reach out to me to ask for recommendations on surgical techniques to optimize limb fitting for the prosthetic limb, which is very heartening to see because I would have expected some of the surgeons to actually just block any conversation because it is their field and not mine. All right, if we think we have a fairly good idea of what the roles and opportunities look like for PM&R, then I think what we need to think about is what is the current status depending upon the setting of practice, depending upon where we all are, and what are the opportunities that lie therein? And I want to distinguish this from the third one, which is really thinking more about aspirations and measures of success for the field itself, which is very tied to this field that we defined in slide one. But I think on slide two, what we are really focusing on is our role. What do we as physiatrists feel of where we lie? What are some of the challenges and the corollary to that? What are the opportunities? So folks in the veteran system, are there any challenges and opportunities that you see? I think that being in the VA system, we have a very robust communication about best practices. We actually have a national best practice committee. I don't know if this group can serve as the national best practice committee for ourselves. We have subcommittees where we split off and some are focused on healthcare delivery. Some are, maybe there's a group that's the best practice committee. There's a group that's talking about, and even in the subcommittees and best practices like exercise, wellness, whole health to improve our patients overall outcomes. That's one group is focusing on that. I lead a group that focuses on adaptive sports engagement and really thinking about, even though we have access to activity-specific prostheses, the experience and knowledge of the national system is there's a large variety. So we still have to make sure that everyone knows what's possible given their resources. Cause we certainly have big tertiary centers and then we also have rural hospitals. So there's still a large variety even within the system. So a lot of it is trying to disseminate that information throughout. So I think those are big opportunities, but I feel like those kinds of things could happen here too. That is fantastic. Do you find any challenges? You mentioned discrepancy between rural and the large academic centers. Yeah, I think that for, so within each VA hospital, they're not every, your staffing level might not be, it differs. So if you don't have a prosthetist on site or within your hospital itself, then you're reliant on basically how you would function in private practice. If you don't have a prosthetist on site, right? You're in an office by yourself. You see the patient, it's just you and the patient, right? You might not have a true interdisciplinary clinic in which case that can be a challenge. One thing that the VA did with COVID having a video, we do direct video to the prosthetist in the community. So even if we write a prescription that goes to the outside, the prosthetist does delivery and checkout via video with us. And so that telehealth, that was a big opportunity to, that was already being talked about and sites were doing it, but it really kaboomed during COVID. Yeah, that was fantastic. Yeah, I know I've had some conversations with Jeff Heckman out of UW. He's no longer at UW, about that. So other thoughts, that was very helpful. Thank you. Other thoughts about challenges. Prosthetic prescription rates, I have always been curious about that. The data I see in literature states about 35 to 40% in the VA system. Is that accurate in your experience? I couldn't really comment on that. I'm not, I haven't looked at that data lately, so I can't really say. And I think when they looked at the most recent metrics, I don't think we differed greatly from outside. And I think that was mostly on delivery times. Because there's actually a huge database called Flow that tracks time from prescription all the way to delivery and every touch point where there's tracking the efficiency. Because there's, of course, there's a lot of, being the government, there's a lot of hands touching the prescription, right? And approvals. But you're not necessarily waiting for authorization. You're just waiting for someone to stamp it so that the vendor can get paid. So they track all of that data and timing. But I think when they compared it to outside models for prosthetic delivery, which is, I think, one of the reasons they were trying to do that AAA study act is to look at the, how the systems are also delivering the care. I don't think that there was a huge difference. Yeah, that is interesting. Because in my experience, I find a lot more challenges, but of course it's not database. But I also find, having worked in three different health systems, that there isn't a robust tracking mechanism either. Yeah, I mean, now they have, and the VA is called Flow. Yeah, so every person, including from my prescription entry, it goes into that system all the way up to checkout. So every time point is tracked. That is fantastic. Kind of like what you think of like a fast food restaurant, right? They like, there's like a timing or your pizza tracker. That's what I think of. Like when you order pizza from Domino's, it tells you like when it goes into the oven and then when the driver's on his way, it's kind of like that. That is pretty amazing. Yeah, the three health systems I've worked with, they're all, two of them are academic, one is non-academic. They didn't have any tracking mechanisms except for the ones that I developed, which were very manually intensive because you had to enter a lot of stuff by hand. They were not automated. So I think that is a huge aspirational thing for the non-VA community. So we'll move on to the non-VA community, academics. Any insight about current status and about challenges and opportunities? One issue I'm having, which is probably similar to private practices referrals, is having a good referral process in place, depending on who's referring the patient, whether it's oncology or orthopedics or primary care, et cetera, is getting a good system in place. I mean, we're within, my hospital's within a big university hospital system, but we both use separate ethics so that don't talk to each other. So I'm finding that for my adult patients, it's actually really hard to get the referrals in the right place to get folks into my clinic in the first place or to do inpatient consults. So it's a patchwork of people that know what I do that are able to get them in. And once I see one of their patients, they're like, oh, I know what you can do. Let me send you more. But it's just getting that process in place is still a challenge. Yeah, I would say I have the same experience at Penn State. So I've been here about a year. I've been trying to develop that continuum of care, which took about six months of conversations with all the surgeons. But trying to see people in acute care, then try and see how many of them we can actually get admitted to inpatient rehab, as long as they're appropriate, and then seeing them in clinic if they're not able to come to inpatient rehab. So creating that acute, post-acute and community continuum. And one of the biggest challenges we have had is EMOs. There is absolutely no question there. And then communication in an academic setting, what I find is that a lot of the referrals may not come at the physician level. They may be generated through therapists. They may be generated through trainees, and trainees come and go. So how do we actually disseminate some of this? And if there are six different surgical teams, that means six different grand rounds, how do you unify all of that? So I completely empathize with that. Particularly, that came up during a recent conversation in our VA conference. And so the trainee, inconsistent referral from trainees, especially for new amputees or pre-education, prior to surgery is inconsistent because the residents come and go, like you said. But a couple of sites talked about, like they have a new amputee order set that automatically is constructed and is in their EMR, which I thought was pretty, that's great. I feel like I need to do that with my own referrals. That's a great idea. Dr. Vinod, you are in an academic system as well. What is your experience? Yeah, I agree with the referrals. I think the biggest thing is educating the different teams about what we're able to offer the patient and what our outcomes are once the patients do come to us and how we do follow them throughout. I recently did a grand rounds and I have another one scheduled with the different vascular teams to discuss limb loss prevention and how even after a toe amputation or a TMA, by providing the patient with a partial foot prosthesis, making sure that they have appropriate follow-up care, all these things, making sure that they're following both the podiatrist or wound care, whoever it is, these things can assist with preventing limb loss. If we work together, then we'll have better outcomes. And then with surgeons, some of them have their favorite prosthetist. So the patients get sent straight to the prosthetist and just totally bypass PM&R. And then the patients are left without having any rehab or anything. Sometimes they fall through the cracks and they'll come to us months later and they just haven't got a prosthesis yet, they haven't done anything and they have contractures and all this stuff. And it's just like, man, if we were just involved from the beginning in this patient's care, we could have done so much for them. Yeah, Vinay, I agree with you, getting the early communication. Well, one thing I did remember, so I should mention this, I forgot to mention it when I was talking earlier, I get the surgical schedule automatically from Vascular. They send it every week or as it changes, I get all the updates, I'm on that group. And so if I don't see a referral, I'll remind the nurse practitioner or whoever, I'll say, can you make sure you get them on my schedule? And if it's before they're admitted to the hospital, then I will, we have an open access that doesn't require consultation. I will just call the patient and put them on my schedule for my outpatient clinic. So that's, but there's not very many of those. A lot of these happen like very urgently. So I might not know if somebody gets added on. I'll be alerted if somebody gets added onto the schedule last minute too. So that's another way to kind of, you don't have to rely on them to actually call you or you just are on an email list. That is terrific. So what I do, having worked with the IT folks here, there is a way to look up within the system, all people admitted with a diagnosis of lung loss. It's not perfect, but it allows us to be able to do sort of what you're doing, which is if you find that somebody is not consulted with you, it's a gentle tiger text or tiger message to them and the internal messaging system. Hey, this is PMNR, would you like us to get involved in care coordination for this patient? And I have never really had anybody say no. So some of those workarounds, I think they are very time intensive. I think that is the challenge. That is fantastic. All right, well, for the sake of time, we'll move on to private practice. Folks in private practice working with lung loss, what is your experience? Oh, I think the referral process is an issue. Also, it helps to get to know the nurses in the acute hospital that work on the vascular floor and the post-surgical floor and the case managers because they will sometimes drive a referral to PM&R. But, you know, you're not as connected. And we're also very busy, so it's hard sometimes to get the time to do everything that we need to do with a new amputee limb loss. Yeah, that's a great point. Do you find challenges, if you wanted to do only limb loss, do you think you could do that in private practice? Not in the town that I live in. We don't have the volume. Yeah. And I think that is the case. Based upon my conversations, I may be completely off base here. But based upon the conversations I've had in private practice, I think it's really difficult to do only limb loss. Academic systems support it to some extent. Again, it depends upon the city. And then VA, I think, is really the place where people flourish and can do a lot more dedicated limb loss related rehab. All right. Thank you for that insight. I appreciate it. Any other settings that I may be missing? Okay. We have about 17 minutes left. I want to be respectful of everybody's time. We'll move on to this last objective, which is defines aspirations and measures of success for the field. And Vinay and I just brainstormed the categories. You can categorize them in any given way. The way I have it here is starting with the threatened limb. And I published a paper, I believe it was last year, this should be 2023, on the limb loss rehab continuum. It's an implementation framework. It basically takes everything we know and applies implementation science to it to have a structured methodology to develop such programs. And Dr. Eskenazi has the seminal paper that came out back, I think in the late 1990s, early 2000s, where he talked about nine different stages or nine different phases. And then there has been a study out of Australia that takes that, makes it a little bit more quantified and does so to try and understand faults and what the risk of faults looks like for patients. So I took those concepts and I basically distilled it into a program, which I, and I've used that framework to develop programs now at three different places. So the steps there, everybody recognizes these, and that's how I categorize the slide, is you get into that, that phase of experience where the limb is threatened. If you're thinking of somebody who was at an accident, that is when the limb starts getting threatened, is at the time of the accident. For somebody who's dysvascular, it may start much earlier with chronic wounds. For somebody who's oncologic, it may look different based upon the time that they actually went to an oncologist and had the diagnosis. But anytime we feel that the limb is threatened, there's always an effort to try and save it if possible. And then that is followed by these five steps that we essentially need to get a person from surgery, surgical stabilization, to pre-prosthetic rehab, which basically includes prosthetic prescription, prosthetic fitting, and then finally prosthetic rehab. Ideally, what I have seen in the literature is that this timeline looks like, ideally should be three months or under. My experience has been that it takes five to six months. It'd be average people out, but it could look wildly different depending upon the system. And then once this is completed, patients still obviously require lifelong care. So that goes into that community function. And then there can be metrics that we can have for the overall journey. And then I've listed a number of aspirations. I'm not sure we'll have the time to go through these and the measures, corresponding measures of success. Coming from a health system science quality background, I always tend to think about if we are doing something, we should be able to track it. And if we are not able to measure it, how do we know whether we have made any changes or improvements? So starting with the threatened limb, I think one of the major aspirations I have for the field is that PM&R should be consulted early for pre-surgical planning. In your practice, do you see anything else or do you think there would be anything else from a field perspective that you are already doing or you would want to see uniformly across the board, happening everywhere in the country? Well, for me and the pediatric community, it's also pre-amputation education and also the oncological community. So that's something that I actually spend a lot of time doing, seeing young, I just saw a nine-month-old yesterday with a limb difference and just talking to them about long-term outcomes, the whole prosthetic fitting journey, etc. But this list is fantastic, but it's really more about surgical, not necessarily limb difference. I agree. So if you like to modify this to be for congenital limb difference or oncological, like where there's a planned, you have time to decide what type of surgery you're going to get versus like a dysvascular or traumatic where you don't have that time, or you can sit down with the families, you can do prosthetic education, provide resources, that type of thing. Great points. I completely agree. This description is specific to, as you mentioned, specific to limb loss and not to limb difference. Limb difference, the journey will look very different. I think even for osseointegration, probably this journey will look a little bit different. Thank you for that. Other folks with thoughts about threatened limb, anything else they think would be aspirational for the field? Okay, we'll move on to post-surgical stabilization. Vinay talked a lot about, a lot about some of the things here. The surgical techniques, I think is the very first one that comes to my mind. So having talked with surgeons here, many specialties do not know what TMR is. So talking to people to try and incorporate surgical techniques, residual limb, that is the other thing I've seen. I've seen some people will try to preserve maximum length as opposed to the ideal length, which can get into challenges with prosthetic joint fitting. And sometimes they will have really short residual limbs because they feel it is successful. And then that creates challenges with suspension. So surgical techniques, education, I think even for us as physiatrists, uniformly across the board at residency level, I'm not really sure what that looks like. I know only about a few programs. Making sure that our folks understand these surgical techniques, especially newer things that are coming in. PM&R consultant, of course, is on that list and then pain management. I've seen a lot of success with our anesthesiologists doing these blocks currently, putting people on pumps where once they are off in 72 hours or longer, I'm not really finding much phantom pain or much limb pain at the end of it while they are inpatient. Now, when I see them outpatient, I don't have enough numbers right now to be able to definitely say one way or the other. But it seems like it's really useful. So questions for folks, are there number one, what is your experience with these? And are there any other aspirations or any other experiences you have that you think would be helpful to share with the community? I think post-surgically even, you know, just as simple as how to do a figure of eight wrap, you know, we a lot of times we find that that's not done appropriately. You know, there's various kinds of post-operative removable rigid dressings. When is one more appropriate over the other? When I was a prosthetist in Baltimore at Hopkins, we used to do a lot of eye pops, immediate post-operative prostheses. Nowadays, you don't really see much of those. And really there was no research or anything done on them. So, you know, these kinds of things would be interesting. Yeah, that brings up a generic question, one that I've been struggling with because I find variability. What is the ideal length of DVT prophylaxis post-amputation? And major amputations, not minor amputations. What do folks typically use as the agent and what is the duration? So I haven't seen much literature. Variability that I've seen really goes from four weeks is minimum that is recommended, at least in the orthopedic surgery literature. They say it's a major surgery, use at least four weeks, but I've had some surgeons recently tell me two weeks and I've had some people say they're ambulating well, discontinue at discharge from ORF. So a lot of variability. I would love to know more about that. Timing of shrinkers is another one that comes up very commonly. I've seen vascular surgeons start it on day one and I've seen other people not use it until sutures are removed. So I think there are so many questions that one could do a systematic review or one could do a research study and one could do, the power would only come if we did a multi-centric study. If you just did it in one place, you won't really get the power. So these are some of the thoughts or aspirations in this field. Pre-prosthetic rehabilitation. What is everybody's thought about appropriateness for inpatient rehab? In other words, what decision criteria do folks use? I typically end up using medical complexity and level of limb loss. So if somebody is not medically complex and they are, let's say, a trans-tibial amputation, insurance would likely not approve them anyways, but I consider that if they're doing functionally well on their assessment at acute, if they don't come to inpatient rehab, I still find it relatively acceptable. For others, I've gone to back and do peer-to-peers and I've not had as much success as I would have liked. But aspirationally, I feel like there are other goals that are met in inpatient rehab, like contracture prevention, edema management, wound care management. And one of the thoughts is that we could potentially reduce the length of stay at the acute hospital by getting them over to inpatient rehab and working on what we need to be working, because they may not get some of that training while they are at the acute hospital and they get discharged home. So thoughts about that. Do folks feel that inpatient rehab should happen at pre-prosthetic or pre-prosthetic rehab should happen in inpatient rehab, or is it okay for people to go home? And I think it also depends on whether they have good shoulder joints and what their other leg is like. Somebody that doesn't have good upper body function needs to go to the inpatient rehab, but you get a 25 year old with a traumatic amputation that's jumping out of bed that, you know, in the acute care probably doesn't need to. So really depends on the whole person. All right. So it seems like, all right. Prosthetic prescription. I think this is where most of my frustration lies in that we are able to prescribe. We have an integrated practice unit clinic where we have the prosthetist present. And then we focus a lot on the documentation, which I think everybody here would be doing. But are there other aspirations that folks think would be helpful for colleagues who do not do limb loss as frequently for them to know? I think discussion on candidacy of what a patient is appropriate for a prosthesis. When will the prosthesis benefit the patient? I know I've seen some recently, you know, I just had a patient come to me, bilateral or extremity amputations, right AK, left BK, and the right AK had almost a 70 degree flexion contracture and right BK almost 90, and she was written for prescription for prosthesis. And it's just like, you know, what are we doing? We really need to, you know, education is so important, you know, because in the end, we don't want to harm. We don't want to harm our patients. Absolutely. So shared decision making, I think becomes really important that developing tools for shared decision making can be another potential research project, which one could develop and then try and see if it is helpful in different centers across the country. All right, prosthetic fitting, I think there is a lot here with appropriate componentry and timely completion, those are the big ones. And then prosthetic rehabilitation, I think it's the same question as pre-prosthetic rehab, which is the justification for prosthetic rehabilitation. Do we feel that prosthetic rehabilitation is best done in an inpatient setting? So, so what I typically find I can share is that, uh, the way I describe it to folks is that it's bootcamp. It teaches you a lot of stuff in a very condensed amount of time. We focus on skills. It's basically focused on learning skills. It's not focused on maximizing distances, not focused on minimizing assistive devices with prosthetics. It's really skill acquisition, learn how to take care of the limb, learn how to take care of the prosthetic device, fall prevention, learn how to do basic ADLs, uh, focus on gait deviations, focus on prosthetic alignment, uh, focus on medical risk factor modification, focus on minimizing any sort of secondary complications can be done in about a week to 10 days. I still find challenges, but in my mind, for the most part, even for people who are less medically complex and even trans tips who can walk, they can put on the prosthetic device and walk. A lot of them, it's still beneficial to undergo that cross team training, which includes that entire team work, not just working with therapy in the outpatient therapy setting. I think it becomes even more important than pre-prosthetic rehab to have prosthetic rehabilitation in the inpatient setting. But I, I am biased on this. All right. Uh, talking about community function, abandonment rate, I think is the big one that comes to my mind, uh, where we find often that if prosthetic devices are not appropriately prescribed, they lead to two challenges. One is increased healthcare utilization. And then the other one is mental health. If people get a prosthetic device and their expectations are set that we are going to get a prosthetic device, we are going to use it. And they have gone through three months of this entire process of getting it. And then it's sitting in a corner and does not help their mental health. So I think it's, it's a healthcare utilization challenge and, uh, as well as a mental health challenge. So guidelines to talk about, uh, candidacy, which, which Dr. Monodia mentioned, I think is really probably one of the biggest things we can do to improve that. And then overall journey, when we start thinking about this entire continuum, then I think there is a way using this implementation framework or other similar ones for limb difference to figure out where the gaps and delays lie. Start thinking really about shared decision-making, start thinking about inequity and so on. And so with that, I'm going to just summarize it in a very simple slide. I think it really is for us to think about what the field looks like, what does our role look like, and to look at that intersection and see how we can move both of these forward together. So thank you very much for attending. I think we have just a few seconds left if there are any final questions. All right, we are at time. Well, thank you very much. Really appreciate it. Please feel free to reach out to us. Uh, if there are any questions, suggestions, thoughts for the group, I think it would be very helpful. I think we as a community should continue to work together to move the field forward, uh, the field of limb loss and rehabilitation, as well as the field of payment outcome. Thank you and have a great day.
Video Summary
The video transcript presented a discussion on limb loss and limb preservation rehabilitation by Dr. Pradeep Grover and Dr. Vinay Vinodia. They emphasized the need for collaboration and discussion within the field to address challenges and opportunities, focusing on education, research, and clinical care. They highlighted areas such as the importance of early consultation, preoperative planning, appropriate surgical techniques, prosthetic prescription, fitting, and rehabilitation. Discussions included challenges with referrals, variations in care across different settings, and the potential for improving outcomes through shared decision-making and comprehensive care pathways. Dr. Grover shared a framework for the limb loss rehab continuum, emphasizing the importance of structured programs and quality improvement in the field. Overall, the conversation aimed to define the scope of the field, identify key aspirations, and establish measures of success to enhance care for individuals with limb loss and limb difference. The participants concluded by emphasizing the importance of continued collaboration and communication within the community to advance the field of limb loss and preservation rehabilitation.
Keywords
limb loss
limb preservation
rehabilitation
collaboration
discussion
education
research
clinical care
prosthetic
rehab continuum
shared decision-making
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