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Member May 2025: The field of Limb loss, differenc ...
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Welcome, everyone, to our Friday Lunch Member May session. My name is Jordan Burkhart. I'm the Director of Member Engagement for AAPMNR. I have some housekeeping notes to share with you before we begin today's session. The views expressed during this session are those of individual presenters and participants and do not necessarily reflect the positions of AAPMNR. AAPMNR is committed to maintaining a respectful, inclusive, and safe environment in accordance with our code of conduct and anti-harassment policy available at aapmr.org. All participants are expected to engage professionally and constructively. In addition, this activity is being recorded and will be made available on the Academy's online learning portal. An email will be sent after this activity with a link to bring you to the recording and evaluation. For the best attendee experience during this activity, please mute your microphone when you're not speaking. To ask a question, please use the raise your hand feature and unmute if you're called on, or you can use the chat feature to type your question, and I will read your question in full for the recording. And please note that time may not permit the panel to field every question. So with that, I would gladly introduce Dr. Grover as our session director and hand it over to him to begin our presentation. Good afternoon, everybody. Thank you so much for joining us on this Friday afternoon to have this conversation with us around the field of limb loss, limb difference, and preservation rehabilitation, exploring clinical education, service, and research landscape. My co-presenters today are Vinay Vinodia and Marlies Gonzalez-Fernandez. I'll hand it over to each of them to introduce themselves briefly. Dr. Vinodia. Thank you, Dr. Grover. My name is Vinay Vinodia. I'm the director of limb loss and prosthetics orthotics at Tier Memorial Hermann and assistant professor in PM&R. Previously worked as a board-certified prosthetist before medical school. So limb loss and amputee rehab is a really important thing for me. Thank you, Dr. Vinodia. Dr. Gonzalez-Fernandez. Yes. Good afternoon, everyone. This Friday. I'm Marlies Gonzalez-Fernandez. I'm the director of the limb loss rehab program and fellowship at Johns Hopkins School of Medicine, where I'm also professor and interim director of the department. Happy to be here today. Thank you, Dr. Gonzalez-Fernandez. And I'm Pratik Grover. I'm an associate professor in the PM&R vice chair of quality at Penn State Health and I'm the director of a new center focused exclusively on limb loss difference and preservation rehab with three different missions, research, education, and service. And we'll talk about that briefly. These are our disclosure slides. The objective of this reflection and sharing session. In other words, this session is intended to be more about discussion and a little bit less about presentation. What we would like from the audience would be to critically analyze clinical coordination opportunities and solutions on the clinical landscape. Think about what limb loss rehab training opportunities your programs have on the education landscape. Think about community support resources in that particular domain. And then finally, think about collaborative research opportunities. The way the session is structured, we'll start with a little bit of a review. This conversation actually started when I took over as the chair for this group for limb loss. So this conversation actually started back with member May last year, continued with the national conference. We are here today, so we'll follow up on that. And then the hope is to continue this conversation in the coming national conference as well. So we'll spend about 10 minutes doing that. And then we will spend about 15 minutes each talking about clinical landscape, education landscape, advocacy, and research. And the way these are structured, we have a couple of slides to just highlight what the concept looks like from our perspective at Penn State Health, at TIR, and at Johns Hopkins. Then we will have a poll, which is a couple of quick questions that Jordan is going to help us with. And then we'll open it up for discussion for about 10 minutes. So the bulk of what we are doing for each of these is discussion, and I will actively take notes on my plan at the end of this, is to get a summary together with some actionable insights and share it with the group. And then we'll spend about five minutes talking about next steps. So going back to the member May meeting, which we had last year around this point in time, we really talked around four main themes. That one was led by Dr. Vinodya and I. The first theme was scope of the field. Can we actually define the field? Does it make sense to combine limb loss, limb preservation, and limb difference? These are rather heterogeneous entities, but the consensus that we had from the group was it does make sense to put them together. And then we talked briefly about using continuum of care models, because we provide service to people for limb loss and difference across the continuum, starting with acute care, post-acute care, and community care. So that makes sense as well to include as part of the definition. Then we talked briefly about the role of PM&R for the field and some form of a position statement. We recognize within PM&R how much we contribute to the field, but I don't think it's externally recognized. So we've been working a little bit on that. And the consensus was it makes sense to get that together and to think about us not as leaders only, but really as team players and team members, because it's a pretty big field. The third objective was to think through aspirations for the field and consider thinking through white papers. We haven't really got very far with the white papers, but we had some detailed conversations around what our aspirations for the field. The first one was in the surgical domain. We need to talk a little bit more about TMR, RPMI, osseointegration. These are techniques that help people. The other disciplines that we work with don't always know it, so it becomes important to talk about that. Talking about the rehab PM&R leadership team role, we briefly mentioned that. Talking about prosthetics, we talked a little bit about myoelectrics for the upper limb and then having microprocessor needs for the K2 level. And we know that that has been approved, so that's great. And then finally, we talked a little bit more about having more fellowship-related opportunities. And then our fourth objective was really defining what measures of success look like. So clinically, what do the measures look like? For example, for osseointegration, it would be the success rate of osseointegration itself. At a functional level, it would be things like, are we really integrating PROMIS kind of measures into our regular clinical practice? At a system level, success would be getting better insurance approval rates for rehab and for devices. And at the educational level, success would be having more fellowships and possibly resident interest groups. So that's where we ended the member-made discussion. And we took the conversation forward at the national meeting, and we talked more around initiatives. So thank you to all of those who were there for this conversation. I will summarize briefly what we talked about. We really divided the team into four main categories, clinical, advocacy, research, and education, which from an acronym perspective spells care. In the clinical field, we really talked about thinking through prosthetic rehabilitation practice guidelines. We talked about trying to have consensus on what osseointegration rehab protocols look like and disseminating this information. At the advocacy level, we talked about the government accountability report that was commissioned by the Amplitude Coalition and a few other organizations that actually did come out later in the year and has some very startling statistics. We talked about participation and so everybody can move. There's a national movement to try and get people recreational prosthetic devices. When we talked last year, I think eight states had got approved. Recently two more have been added to that list, so that's moving forward. On the research side, we talked about a network of limb loss programs and multicentric collaboration, slightly different in concept between the two, where the network really is many, many more programs that at least start the conversation together, very similar to StrokeNet, having essentially an AntNet. And then multicentric collaboration is more at the institutional level, collaborating across institutions on common projects, especially the EMRs look similar. And then on the education front, we had talked a little bit more about what are some of the guidelines around fellowships and then educational curricula working with AVPMR. And then we had talked about resident interest groups. So we took this conversation and we put it on a benefit effort matrix after the meeting was done. And what we found, you can see it here, is just to orient you, benefit on this axis right over here and effort at the bottom. Green is really where we want to be. And then blue is fine. And then the light blue is fine. The dark blue and the orange are not places that it's worth putting effort into projects. And we found that almost everything really falls in the green and the blue, but it is easiest to implement clinical work related projects because we're all doing clinical work. It is probably the most translatable early, early on. Educational follows very closely in that regard. Advocacy becomes more difficult and research, especially given the current landscape of funding and the fact that NIDILRR and NCMRR both seem to be under attack at this point. Research becomes much more difficult. To give you updates on the rehab practice guidelines, we are currently working across four different universities to try and think through from a scoping review perspective, what really makes a good prosthetic candidate? And for people who are good prosthetic candidates, what are the right settings? So we already have started on that project. That's underway. On osseointegration rehab protocol, I believe Dr. Vinodia published something pretty recently and he can talk about that. On the fellowship front, Dr. Gonzalez-Fernandez can talk about the new fellowship at Johns Hopkins and we'll be talking about that briefly. Resident interest groups, I've had more interest at conferences from residents coming up and medical students coming up and talking more about this. I'm not sure what the opportunities look like for formally forming that under one of our organizations, but it's something worth considering. So everybody can move. We talked about, we have taken that advocacy forward from eight to 10 states. They formed a medical and research advisory committee. I serve on that committee, as do a number of other people, and we are trying to also generate evidence and some publications and presentations to take that movement forward. The government accountability office report came out last year, has statistics that are staggering out of the scope of this presentation, but I would recommend everybody please look at that and use those statistics. I'm using them in my presentation line and the Amphiotic Coalition is using them and other people are using them as well. And then from the research perspective, I've had conversations with several people at individual levels, but I don't think we have made much progress at all. So I'd love to be able to talk more about that as well, but I will stop right there before we transition into exploring the clinical landscape and see if anybody has any initial questions or thoughts. Jordan, do we have anything in the chat? Nope. Nothing in the chat and just wanted to do a quick time check as well. Okay, perfect. Dr. Venoria, Dr. Gonzalez-Fernandez, anything to add before we move on to the next section? I think that was a great summary, Pratik. Thank you. All right. Fantastic. All right. So let's talk a little bit about exploring the clinical landscape. And again, the way this is set, we'll use this initial slide or set of slides just to present the concept, then we'll go to a poll, which will be open for about 30 seconds to a minute. Then we'll look at the results of the poll briefly, and then we'll have about 10 minutes for each of these four sections for you to share your thoughts and guidance for everybody else, as well as any challenges that you might want to bring up. So on the clinical landscape front, we typically, when we think about systems of care for lumbar loss, we are really thinking about two very distinct systems. We are thinking about the Veterans Health Care Administration, amputation systems of care, which really is a structured pathway for people to get care and they have access to resources. Even there, based upon the GAO report, the rate of prosthetic prescription is about 35%. It's still not very good. On the other side, I think there are several loosely knit systems that allow people to transition across this continuum, which starts often with a threatened limb in some form. It could be an accident, it could be wounds, and then they get a limb loss surgery. And from that point on to getting a prosthetic device and initial independence after training, I think about that as initial episodes of care, because we need for them to go from that initial surgery to learning how to use a prosthetic device safely. And anecdotally, that length is about three to four months, can be shorter, can be longer. Most of the time, we don't have good tracking mechanisms. And then everything after that is lifelong rehabilitation care. The way I have approached this, and there are some publications that I have that are focused on implementation models and frameworks, we have developed a five-step program at Penn State Health, where we coordinate the patient's journey completely from starting with seeing them on consult, then bringing them to inpatient rehab, then sending them home, but having a prosthetist assigned to them. They have chosen a company by this time who follows up with them and we have our hospital liaisons follow up with them as well if they're coming back inpatient. Limb heals and matures, we communicate with the surgeon, the surgeon lets us know when the sutures are out, we bring them back to clinic, that's between limb healing and maturation and prosthetic fitting. We see them back in the clinic for prosthetic fitting, that is step four, along with the prosthetist and prescribe the prosthetic device, discuss what makes sense for them to come back to inpatient rehab versus outpatient and that kind of stuff. And then finally, once their prosthetic device is ready, we get assessments completed with outpatient therapy, submit to inpatient, and bring them back for inpatient prosthetic rehab. Our goal is to try and get all of this completed in three to four months, again, this is only one journey and applies primarily to lower limb loss, upper limb loss will obviously look different. I will stop there and see Dr. Vinodya and Dr. Gonzalez-Fernandez, if you want to share your experiences around your programs at your universities. Yeah, sure. Thank you, Dr. Grever. I think this is a really important topic and, you know, sometimes we see that even PM&R is not included in these stages. Limb loss is an interesting field where patients can actually, straight from surgery, sometimes be directly referred to a prosthetist and can actually skip over the whole PM&R, you know, having a whole, like the whole evaluation. I've seen patients even skip the process of therapy, which obviously their outcomes aren't as as good. So having a continuum of care is so important for these patients and also educating others on why it's important to have, why you can't really uncouple rehabilitation from prosthetic care. And so, Dr. Grever, you published the continuum of care and it was interesting to see that we actually here follow very similar, like right in line. You know, we may call it different things at different stages, but all of these stages are being addressed. And I really think it's important to kind of set precedence and put our place out there that, you know what, PM&R is really important in the patient's limb loss journey. And we play a big role in this. It's not something that can be skipped over. And I think part of that is going to be data, sharing data on patients and doing some research and showing that, you know, individuals that were part of a limb loss program through PM&R did better, you know, that there was better outcomes. They have that, there was the lower extremity amputation prevention project that was done, the LEAP project, where they showed that individuals with diabetes, with increased follow-up care and increased, you know, monitoring of the skin had better outcomes. But I think we can do a similar thing within PM&R, showing that appropriate therapy, appropriate follow-ups, making sure they're getting the appropriate type of prostheses. These things actually optimize the care of these patients and may even reduce the chances of increased re-amputation in our dysvascular patients. Thank you, Dr. Venoria. Dr. Gonzalez-Mendez? Yes. I agree. And in the interest of time, I won't repeat what you guys are doing. You know, we have our hands on all these stages as well with different names. I think we are still challenged to touch every patient, like we're on a referral model. So there's patients that still fall through the cracks that are never touched by us because they, either they're coming from out of town or, you know, they have, quote-unquote, smaller amputations, those transmetatarsal amputations and so forth, that still don't get to us. But overall, I think that, again, the approach from surgery to lifelong care is of paramount importance. Thank you. It's time for a poll. Jordan, I'm going to hand it over to you to administer the poll, and then we'll get into the discussion. Hey, we do have a majority of people who participated in a up. We still got some answers coming in. I'm going to share the results. All right, fantastic. So it seems like almost 70% of people have almost all the settings. It seems the inpatient prosthetic rehab piece is the one that is a little bit less established. And then looking at a scale of 1 to 5, how well is your care coordinated, a majority say 4, but that is under 50%. And so if you just add the top box scores, 4 and 5, then that is about 50%, which means there is opportunity for the other 50% to have better coordinated systems. So thank you for sharing that poll. I'm going to go on to the next slide, which I'm going to take notes. It's everybody's time to contribute. I think Dr. Dillingham, you had your hand up. So if you want to get us started, that'd be great. Oh, no, thank you for hosting this discussion. I was just going to say that there's a series of papers from our group and Margaret Steinman and Joe Chernyky's group showing that after limb loss, if you go to inpatient comprehensive rehabilitation, your outcomes are much better. Psychotic use, depression, death, reamputation virtually across the board. I've used these papers when appealing decisions to our insurance companies. That is terrific. Would it be possible for you to share those papers with us? Absolutely. Maybe we can have some form of a repository so it's available for people who are doing some of these peer-to-peers, they can use that literature. There is a comment in the chat that says, I believe we are asking the questions to a group that may not be the reality of healthcare in the US. That is a great, that's a great point. Would you like to elaborate a little bit more on that, please? Happy to try and do that. This is, we're talking about people who are in systems that have pretty solid healthcare delivery processes and that is a problem in the great majority, particularly small community facilities. I don't want to come away from here that we have great systems that have all options or most options because that's not the reality everywhere. You have places like yours or Tim's place or Vena's place or Marley's who have just terrific structures of healthcare, but definitely far from what happens across most other sites. There is a whole body of literature showing that where you live is what you get. From rural places to referral networks to hub-and-spoke care centers, it really depends on your geography. I think that from my vantage point, I completely agree about you. What I see is if this group who is highly interested in the topic, only 50% of us have coordinated care. Imagine those not represented here. Yeah, that's a great point. For those of you who have much more experience than I do, what would some of your recommendations be to try and improve this level of clinical care for people who don't have access to such systems? What would be the most effective interventions? Embed yourselves with local prosthetic facilities. I think at the very beginning, you mentioned that there is a path that essentially skips the whole process of rehabilitation, a surgeon directly to a prosthetist. Some surgeons feel that they have all the tools to address it, so that's one way to look at the world. The other is to look at a world in which more eyes looking at the same problem can provide better solutions. Yeah, sometimes there is redundancy, and so we need to be careful not to become redundant. I strongly believe that working with the teams of those who are providing devices is a critical piece. I always see these prescriptions fly to PCPs who have no idea what they're writing for, and just, please sign here, and they just go ahead and sign on. I've gone to PCPs and actually tell them, I did a few years ago a lecture in which the lecture title was, please just sign here. They had no idea what they were signing or why they were signing it, but they went ahead and did it on behalf of the patient. I think that those are the opportunities that I see. Yeah, that is a great point, Dr. Eskenazi. I will tell you, I just had somebody with bilateral trans-femme limb loss who had full-length prosthetic devices, and they could not use it at all, so we had to talk about studies, and it is rather difficult to tell a patient that what they started you off with was not setting the right expectations, so I completely get that. Other folks who may want to share experiences? Yeah, just to amplify what was said, I think that partnership, in the absence of a large coordinated system, that partnership with local prosthetists is the most important. And in some cases, you know, I remember hearing a prosthetist coming from Alaska who was saying that he was very eager to have any medical help, but again, from some of these remote places, it's unavailable. We do have a comment in the chat as well that says, can we provide a list of these articles? We have difficulty getting patients approved for IPR pre-prosthetic, and it is essentially never approved except for workman's compensation for prosthetic training when coming from home. I did also put in the chat, and I'll share the chat with you afterwards, Dr. Grover, a link to the amputee limb loss member community, because we can share resources in that community as well. That is terrific. I think that is great. So maybe we need to think about some form of a repository or some form of a hosting place where we can have some of this literature, experience, and expertise posted in the PHIS forum. Okay. All right, any closing thoughts on this one before we move on to the next section for the sake of time? I think we could continue this conversation for a long time. All right, we'll go on to the next one. And here we are going to talk a little bit more about the education landscape. So I'll start with sharing my experience. Again, we are a relatively new program. I've been at Penn State for only a couple of years. What we started in this academic year is limb loss rotations, dedicated rotations for our fourth years. I haven't really extended to second or third years, but this is what the approximate structure looks like. We like for them to rotate between five different discipline domains. One is surgical clinics, and that's six different disciplines. So that's wound care, podiatry, orthopedics, vascular, plastics, trauma in orange. Then we have them rotate in the PMNR continuum. You can see that, for example, on Monday, I will see patients, inpatient from about 8.30 to 10, then I'll have a clinic for a couple of hours, and then I'll go see consults at our hospital. So that in a span of about five to six hours, I've basically traversed that entire continuum. And we have residents following us on that entire continuum to understand how perspectives differ. We have built in a little bit of therapy that's in dark blue on Friday. You can see the 10 to 12 spot. Then we work with orthotic and prosthetic companies. You see that in the light green, and we have three companies we work with. So we don't want them to go to just one because each one of them has their own perspectives. So they spend the afternoons for about an hour and a half to two hours rotating with these companies on Monday and Wednesday, and sometimes on Thursdays. And then we have access to two gait labs. They're not clinical gait labs at Penn State. We do not have a clinical gait lab, which is a little bit of a disservice, but we have access to two research gait labs at two universities close by where we are doing some research projects with them. So we actually have a fourth year spend time at the gait lab. It's a month-long rotation, and one lab focuses on the upper limb, one does more lower limb. So it's not exactly completely limb loss focused, but it accompanies what we are teaching them in our biomechanics sessions. We have three dedicated biomechanics workshops in addition for all the residents where we cover spatial temporal parameters, kinematics, kinetics, energetics, and EMG. So this gait lab has been a pretty big hit for most people because a lot of them have not really seen gait labs, and we also tend to use a little bit of variable gait technology, sensors, that kind of stuff. So it gives them a nice balance between what a traditional research grade gait lab looks like and then what does variable technology look like that is more applicable in the clinical setting. So that's the limb loss rotation that we have. We do not have a fellowship, but for fellowships, I'm going to hand it over to Dr. Gonzalez-Fernandez and Dr. Pimote to talk about their respective fellowships. So the conversation from my perspective is going to be short because this is a brand new fellowship that we've been working to establish in the last couple of years. We know that there's still a great need. You know, most of the few fellowships that are in the country are scattered. To my knowledge, the majority in the VA system. So we are trying to support those fellowships and increase the number of slots that are available with this fellowship. We have the opportunity to, due to proximity, to collaborate with colleagues at the Bethesda Naval Walter Reed Hospital to try to provide an experience that is focused on both traumatic amputations that we see more in the military space and the community setting with this vascular amputees. So where our hope is to continue to develop leaders that will go to their specific parts of the world and parts of the U.S. to then continue to grow these programs that we know are not available, especially in what I call the central U.S. Thank you. We'll move on to the next fellowship, Dr. Vinode. So I agree with what Dr. Gonzalez-Fernandez was speaking about. I think, you know, we need more of these fellowships across the country, and I've been actually seeing more and more residents that are interested in limb loss rehab, amputee rehab. So I think it's such an important thing. A lot of the rotations that Dr. Grover shared earlier, we also have our residents and our fellows go through. It is a little bit more trauma-based as we work with the orthotrauma team here. We have one of the largest and busiest trauma centers in the country out here in Houston. So a lot of polytrauma. They get to spend time in the OR as well, and then in the post-op trauma clinic, outpatient trauma clinic, and then the osteointegration clinic, which is a multidisciplinary clinic with ortho, and then get to spend some time with research and the local prosthetists. Thank you, Dr. Vinode. So moving on to the poll, and then we'll move on to the discussion. Jordan, if you don't mind bringing up the poll for this section. The poll is launched. I'm hoping everybody can see it and participate. Okay, I'm going to end the poll. All right, so obviously everybody rotates through rehab, therapy, surgical clinics, that seems to be relatively low. I will tell you that at least some surgical disciplines we are finding, we survey our residents and talk to them about their experiences. We are finding that some disciplines, specifically orthopedics and vascular, seem to provide a lot more experience for them, just in terms of sheer volumes, at least at Penn State, and that experience can look different. O&P is big. I'm surprised that Gait Lab is actually more than surgical clinics, but that could be just all of us here, and the answers may look different otherwise. And then others, it says rehab. Others, please specify. I don't see anything quantitative or qualitative mentioned there. On a scale- Podiatry, podiatry. Okay, thank you. Yeah, we should have mentioned that. And then on a scale of one to five, how robust is your educational curriculum for residents? A majority say it's pretty good, and top box scores are 70%. I'm glad there are no ones or twos. So that looks, actually, that looks better than the last one. So I'll close that, and I will move on to the discussion piece. Dr. Eskenazi, you had- I had my hand up because of the idea of the fellowships. You know, we've had an offering for a fellowship. It's now for three years, and we filled the position one year, and then two years, all of the applications came from out of country. So I, you know, I elected not to fill the positions with out-of-country applicants for a variety of reasons. Some are logistics, some are financial, some are credentialing. So it's interesting to me that, you know, I hear mentioning the fact that, you know, there are more people who are interested, but they are not really seeking additional education in the topic. And I'll just add one more point. In Philadelphia, we're very fortunate. The three, well, now four large programs in the Philadelphia region get together and organize a course for residents, which is actually helped by Tim and his group as the primary site at the University of Pennsylvania. But it's a collaborative, so, you know, members from the teams at Moss and McGeagle and lecture there. And we share the resources to be sure that the residents get the widest exposure possible to the topic. Thank you, Dr. Eskenazi. I will tell you some of my residents actually went to that course this year. They are interested in looking at a fellowship. So they've been talking with me about a fellowship for some time. The course that you have, do you do it only in-person or is there a virtual option or a hybrid option as well? Tim, I'll let you answer that question for the other courses that we hold in the city. We have a collaborative that we do an EMG course, an orthotics and gait course and a prosthetics course. And we decided to drop the virtual version of it for the orthotics and gait course because of the need to really have more hands-on experience. But Tim? We did the same thing for the prosthetics. During the years, during COVID and after COVID, they were all virtual, but now it's in-person. We also set up an ultrasound course that added to those four courses. It's really been a great collaborative across the city. We get residents from New Jersey and other programs as well. Fantastic. What does the marketing look like around these programs? How far and wide are they disseminated? And that applies to the fellowship as well, Dr. Eskenazi. How far is the fellowship disseminated? For example, I don't really know much about it. So do we as an organization need to do more to highlight some of these things? Yeah, I mean, we use the usual paths to promote these positions through some of the fellowship and some of the residency program channels to do that. We've done a little bit of LinkedIn and a little bit of those kinds of things. It sat in the academy list of fellowships as well. So we've used those tools. Thank you. Dr. Crandall. Hey, hi, Pratik. How you doing, everybody? Yeah, so here in Boston, we, in addition to having our inpatient and outpatient rotation, we do offer a fellowship. We've had one fellow come through and we'll be accepting our second fellow this year. To Dr. Eskenazi's point, that fellow is actually coming from Ukraine. And so that obviously is a reflection of the real need in Ukraine to have highly skilled PM&R to take leadership positions. So that was a strategic effort on our part to literally recruit and work with the ISPRM to direct a high quality candidate to come and do the fellowship this year. And again, we're hoping even with all the issues with visas that he'll be able to start in August. To the point of overall interest, I mean, there's interest in the work that we're doing. Some of it may not be in our programs and I can reflect on the fact that I have a PGY-5 resident from Quebec who's spending a month here in Boston. She's taking a position and running an amputee clinic in Quebec City. And she sought out opportunities for training here in the US. I've had similar interests from outside the country because people are looking for specific specialty training and they feel like a fellowship in the US focused on amputee care is not being offered anywhere else. So I do think there is both a national and an international interest in what we're doing. I went to the AAP meeting and I talked to a lot of folks who seem to be interested. I have to tell you some of the people who came to me were medical students, not PM&R residents. They were medical students going into PM&R with an interest in amputee care and they already see the whole spectrum. They think that they're looking to do a PM&R residency and then go on and do a fellowship. So I think if you create the opportunity and create high quality opportunities, you'll find quality folks coming your way. Fantastic, thank you. Any other thoughts before we move on to the next section for the sake of time? I would just add that train your residents well and those who are interested, maybe make some elective activities available to them so that when they go out, they're self-learners and can function in whatever community they are to help build these care systems because you really need a pilot and a very committed individual to build the necessary systems where they're at. And so I think you have the residents for four years, they can learn a lot about this. Thank you, that is appreciated. All right, we'll move on to the next section that is exploring the advocacy landscape. And so this section is more around support groups, peer mentors and similar initiatives. So what I have here on my left, as I'm facing you, is the support group that we run at Penn State. And we started in April, we initially were going to partner with Amphiotic Coalition, I'm the medical director there, but it took us some time to get started, so we just took it off the ground ourselves. What you see is about 30 or so people, this is the cafeteria. It happens once a month, four to 515, we tried hybrid initially, found that the personalized attention that was needed was not there. So we focused it and made it very in-person, very personalized, and you have about seven to 10 team members. So the team that attends is my service group, essentially. You've got a physical therapist, occupational therapist, case manager, research coordinator, and I. Then we have one representative from each of the prosthetic companies that we work with. Sometimes some of them come in, some don't come in. And then the rest of these are either people with limb loss, we have had people with limb difference come and attend as well, and then caregivers. And then we have a nurse coordinator who helps with coordinating several other programs in addition to limb loss. So that's the structure. We run this from four to 515, first or four to 530, first Wednesday of every month. And the way we run it is the first 30 to 45 minutes are really focused around the topic and discussion. So our speakers have included folks like folks talking about pain management, recreational therapy, adaptive sports, nutrition, wound care, that kind of stuff. So there's a theme generally, and then we throw in our summer parties and Christmas party and that kind of stuff. And the rest of it is really interaction. And even though we try to finish at 530, it's going till six. And I'm generally there for these two hours, most of those meetings. So I'm there from four to six. And our initial conversation, a little bit more again, structured, and then we just mingle. And people ask me questions sometimes about their care, and I'm fine with that, and we just let it flow. So that is the support group. We are working to train our peer mentors. Again, we are a new program. We don't have peer mentors as yet. Amputee Coalition is the peer mentor source program. So we'll have peer mentors in another month or so once the training is completed. And I think that's an important conversation. On the flip side, nationally, on my right, you can see, so everybody can move, that is a national movement to get people prosthetic devices covered. In addition to regular devices, it started as so kids can move or so children can move, and then extended to adults. And this advocacy has been passed now in 10 states. The goal is 28 states. Pretty big team around it. Kyle Stepp and Nicole are the two people who are both people with lived experiences that are leading this. And there's a whole host of other professionals as part of the Medical and Research Advisory Committee. So I would recommend anybody who wants to get involved, if you just look it up, you'll find whether it's there in your state or not, and then we can help coordinate that further. And in Amputee Coalition, we already talked about, I'm gonna move on to the next slide and let Dr. Vinodia and Dr. Gonzalez-Fernandez jump in at this point. So just for the sake of time, I'll just be quick here. We have peer visitors that are trained through our hospital as well as the Amputee Coalition. That gives them access to our inpatients. They're able to come and see patients, both inpatient and outpatient. We do walking and running clinics for our patients as well, where once a year we have the local prosthetist. We all come together as one big family and we will fit patients with running feet. We'll have like obstacle courses for them. We'll have yoga, nutritionists come and speak. We'll have a behavioral therapist come and speak. And it's like, basically our monthly peer support groups are done at our satellite hospitals throughout Houston. And then once a year, everyone comes together, usually during the month of April for Limb Loss Awareness Month. And then we have various adaptive sports as well. Thank you, Dr. Vinodia. Dr. Gonzalez-Fernandez, anything you wanted to add on that or should we move on to the poll? We have similar activities. And again, I won't belabor the point. The one thing I wanted to mention is that, in our case, the location matters and the parking situation at Johns Hopkins is very difficult. So fully in-person actually tanked our numbers. So we do hybrid or Zoom patient support groups. So again, it's a matter of understanding the population where they are and what meets their needs best. So there's multiple potential solutions there. As Vinay mentioned, we also do a lot of activities for Limb Loss Awareness Month. And one thing that has been well received among the other things we do is that we include patients in our Limb Loss Symposium. So there are multiple levels of lectures that are scientific, clinical, advocacy type of lectures that patients actually have enjoyed being in even with the complexity of the more scientific lectures. So I think having a variety of opportunities for their different interests and needs is valuable. Yeah, thank you so much. That really does illustrate the spectrum of things that are out there that we can offer to people and that solutions look different based upon where they are. All right, time for the poll. I'll get 10 participants, so I'm going to just got another one. There we go. I'm going to give it another 2nd. Okay. All right, so limb loss support group, 70% are still some opportunity. I feel limb loss support groups are probably a vital part of clinical care continuums. Uh, if if you don't have access to them, uh, if you can at least link them to somebody around, offer them the resources, I discuss this with pretty much every patient I see in clinic. A peer mentor program that seems to be better than support groups, which is great. I think peer mentors are a great resource. Again, it would be nice if everybody had those. So everybody can move around. 50% of the people know about this and are working towards it. So that is terrific for the folks who have not been involved. If you just Google it or look it up, it's right there. And it's very easy to get involved. And then others. What are some of the answers we have in others? I can't see that here, Jordan. Is there a way to pull that up? I would ask people to share in the chat if possible. We didn't have the ability to add in a comment section to the poll. Okay. Okay. That explains that. All right. Thank you. So, yeah, if you could just type in chat, that'd be great. And that can be used to facilitate the discussion. Now, we are seeing about 45% of people that feel that some of the community resources are well-coordinated. A staggering 18% feel they are not coordinated at all. And, you know, if you go back to that initial conversation around clinical care, maybe the other people who are interested who are talking here, what about all the other places where they don't even have basic resources for clinical care? It's probably going to be worse there. So, I think it is incumbent upon each of us to talk more, both within the community for PM&R, but also with all our colleagues in the different disciplines and with patients and with other people about the role of these community resources. Because we recognize that outcomes are only 20% us and 80% is really what people do once they're back in the community. All right. So, I'm going to stop there and go on to the discussion slide and see what thoughts everybody has. What are some of the things that work well? One comment from the chat says, we have added TR role into our outpatient clinic to facilitate access to recreation and our adaptive sports program. That is great. Recreational therapy in the outpatient setting. All right. Other people who have these resources, what are some of the things you're finding that actually work well? What are the things that don't work well? Yeah. You know, one thing that has increased availability of resources for our patients at Hopkins is having a faculty member who is very passionate about adaptive sports. And, you know, they are targeting this population for, again, activities beyond what could be done in physical and occupational therapy. Other folks who have support groups that participate in support groups and recommendations you would have? Prateek, I'll just jump in. So, just to follow up on that. So, we created a, what we call our clinic to 5K program. So, in the spring, there's an event two weeks after the Boston Marathon. It's called the Bionic 5K, which the race director is an amputee and it's obviously a 5K at a one-mile event where both our staff and patients and family can contribute. And so, knowing that we have that as a goal, we built in, instead of couch to 5K, we just call it clinic to 5K and we encourage people to work with our new TR person to build up to the possibility so they can participate in that event. And that's been successful. Fantastic. That is great to hear. We also hand out very cool shirts. So, the therapists and the patients really want the swag. So, if you have good swag, you'll get people to do a lot of things. That's a great seller. My question for you is, is that funding built into the clinical program or is that a foundation funding that you get or how do you support that? We're using foundation support to supplement the TR position in the clinic. But people are obviously, the registration for the event, it's free. So, it's free. So, if you're interested, you can go to our website and you can register for the event and you'll get a lot of great stuff. Fantastic. Dr. Hubbell? In Ohio, well, I Googled, so everybody can move nationally and they actually, they responded right away. They're very eager to have physicians involved. They gave me the information about who is responsible for the advocacy program in Ohio. I've been in contact with them. We've actually met with a legislator that's going to hopefully submit a bill to get this passed and answer questions. We had a meeting of interested parties. So, it doesn't take much. They really want physician involvement. Our voice does help when you're talking to a legislator as far as why we need to do this. Thank you, Dr. Hubbell. Thank you for sharing. All right, we are running out of time. So, we'll move on to the next section. Thank you for that engaging discussion. And this is the last set, which I think is the most challenging that I have found in terms of interdisciplinary, actually even inter-institutional collaboration, which is exploring the research landscape. So, it's collaborating across institutions. So, I'll talk briefly about what we have, which is a center that was newly approved by Penn State College of Medicine. It's called as Limb Rehab CARES, which is still very long, but it stands for Limb Loss, Difference, and Preservation Rehabilitation Center for Research, Education, and Service. I will start with the disclaimer that it is not a funded center. So, even though it is a center, it technically is about 30, 35 of us from about 15 to 20 different disciplines coming together. We are all working on different projects at this point in time. So, we all have our own niches, but we want to start collaborating across disciplines. So, what we have, as you can see, is a propeller. That is what we are using as our logo here. At the center is Limb Loss, Difference, and Preservation Rehabilitation. We have three different domains. So, the first is transdisciplinary research. The second is interprofessional education, and the third is service and policy translation, and they all link with each other. And then we are working across three different cores. The first is clinical outcomes core. So, this is a group of surgeons, pain management experts, anesthesiologists, some engineers, some clinicians, and some system scientists working primarily in the domain of phantom pain, and then we are exploring surgical techniques. There is some interest in looking at osseointegration. Even though Penn State doesn't do much, we are looking to start doing more. We do have surgeons that routinely practice TMR and are looking at outcomes and that kind of stuff. Similarly, vascular surgery, very interested in looking at limb preservation versus limb loss and phenotyping there. Rehab engineering, that is really more around prosthetic gait, looking at the feasibility of using wearable devices and that kind of stuff. We do have some NIH-funded grants with some of the researchers that are looking at sensory input with upper limb devices and so on. And then system science, that's really most of what I do, which is looking at developing these limb care continuums and then some quality improvement. So, we are brand new. We just got approved late last year, had our introductory meeting just about a month ago. Made it hybrid, a majority attended in person, so we are very excited to get this off the ground. And the ultimate goal is really to work on research, but at the same time, maximize education and then also think about service and policy translation, because if you're doing research, you really want it to be going back and contributing to the community, which is why intentionally we have three boards. We have a research board, an education board, and we have a community board, which is represented by people with limb loss and limb difference. I'll hand it over to Dr. Vinod and Dr. Gonzalez-Fernandez to talk about their research at their centers. So, I just listed some topics on osseointegration that really we need to look into. We have these numbers for energy expenditure of ambulating with a traditional socket fit prosthesis. These are some of the things that we need to start looking into, and I know we've already started. There are some initial research numbers that are coming out, but this is also kind of a collaboration between orthopedics, endocrine, we have a doctor that specializes in bone health, and then MSK radiologist, and then our rehab engineering group as well. So, yeah, and I'm sure there's other topics as well that maybe we can discuss later. Thank you, Dr. Vinod. Dr. Gonzalez-Fernandez? We can't hear you. How about now? We can hear you now. Oh, technology, technology. In the osseointegration space, there's a lot of work looking at the devices themselves, as you see, you know, here are the two most common implants we see here. The first one is OPRA from Sweden and OPL from Australia. The U.S. device is compressed that is currently on clinical trials, and that's, again, some of the places where an influence can be made. But it's not the only place. I think control mechanisms, I think there's another slide there, and how we improve the control of those high-level devices is going to be important. So, from a research standpoint, the use of high-end technologies and who the best candidates are for such technology, as well as the control mechanisms for these highly advanced prostheses, is going to be an important frontier, especially in the context where we have social media and all the influence that our patients have. We need to start thinking as well how we identify best candidates, because we know very well doing this practice that for some patients, more technology actually means less function because of the challenges that the extra technology may face. But at the same time, we need to understand those things much better. Yeah, thank you. So, I think that really is, osteointegration research really is cross-cutting. It goes across all three clinical domains, clinical outcomes, rehab engineering, and system science and policy. So, with that, we'll move on to our second to last poll. Jordan, if you want to go ahead. Can I add to this? Absolutely, Dr. Dillingham. Go ahead, please. Our group has been funded for the last 15 years to develop and implement immediate fit adjustable prosthetics. And I think, by far, the greatest need in this world is not for recreational or high-tech devices, but for comfortable, functional, accessible, and affordable devices. And a standard prosthetic manufacturer is woefully inadequate to meet worldwide need, Africa, Ukraine, and it's very high cost. And we would be delighted to partner with anyone on this group. And I'll give a lecture, and you can see if you want to do this. I've personally fit about 160 patients with lower limb prosthetics. I actually think physiatrists should be doing it. It's really straightforward. That is great. Thank you for sharing that. All right, we'll go back to the poll. And for the people that select others as part of the poll, if you want to list that in the chat as well, I can read them out after the poll closes. Okay, I'm going to share the results. All right, so clinical outcomes, 100%. That is terrific. That tells us that most people are invested in clinical outcomes research, which I think is relatively feasible to do or logistically feasible to do in the clinical setting. What would be great if people are doing clinical outcomes research is if we can talk across the group and figure out what are some of the things that are common. We could potentially be conducting multicentric trials at this point in time, which I think from a funding perspective, recognizing the challenges, multicentric, multi-PI trials are the way to go. So if anybody's interested, similar to Dr. Zillingham, in system science-related, clinical outcomes-related projects, please reach out. And system science, I know people said 10%, but if you think about system science, what I'm talking about in very simple terms is you have a program, you're trying to see what the program outcomes look like, what the clinical outcomes look like, and so on. So more than happy to have a conversation. I'm sure Dr. Vinodya and Dr. Gonzalez-Fernandez are as well, as well as other people on this. And then rehab engineering about half. So I think there is real opportunity there as well. It is very possible that the current government may support more bio-devices-related research and proof of concept around bio-devices. We know that the orthotics and prosthetics research program that was under DOD and stopped last year or the year before last has now been rolled into the general medical research programs. So it still does exist. It's not gone. So if anybody's interested in rehab engineering kind of projects, please reach out as well. And we can certainly talk more about that. And then Jordan, did you have anything from others? Yep. In the chat, someone mentioned tele-rehabilitation for prosthetic training. Yeah, that is great. That is squarely system science kind of stuff. So would love to talk more if people are interested in projects like that. And then when we are looking at invested in research, we see it's pretty evenly spread across the board. And that is not surprising. It just depends upon what kind of work you're doing. If you are more a clinician scientist like me, you probably have more time to invest into research as opposed to being a full-time clinician. That does take it in a different direction. I would still encourage even people mostly interested in clinical research to talk to your engineering colleagues and to talk to your other system science colleagues to see if they have projects. They may just want your clinical expertise and an easy way to get involved in research. Dr. Zillingham? There's another thing that's come out now. It used to be in the 2000s, 2010s, that Medicare data was the best data set to do health services research. Now there's something new called Trinet X, and it's Epic data. If you're an Epic user and you provide it to this continuum, you have access to it. And most of your, at least universities that are doing some research are trying to get to it. It's very cheap, and it has almost everything you need. All insurers, all genders, all ages, all payers. That to me is a very great way to contemporarily look at the care and the care continuum that we provide, the outcomes, etc. And it should be doable without having to get large grants. You can collaborate with some of your epidemiologists, health services researchers at your institution, bring the questions to them, and then collaborate. That is terrific. Thank you for sharing that. Other thoughts from other folks on the call? By a show of hands, how many people would be interested in multi-center research projects? And you can raise virtual hands if you don't come on the screen. Okay, I see a few. I see other people may be shy or may not have the time or bandwidth, but I would leave this offer on the table for anybody who's interested in talking more about research. You don't have to be doing research, just interested in thinking through what are some of the themes out there and how you can get keyed into this call. National conversation around research, because it's very surprising to me that the limb loss population, latest Avalare study, 5.6 million people with limb loss and limb difference, much greater in number than some of the other rehab diagnoses. And one of the most concerning things to me is, we did a study back in, a little after 2000, surveying the Amputee Coalition of America folks, and 33% were not happy with the results. And one of the most concerning things to me is, we did a study back in, a little after 2000, surveying the Amputee Coalition of America folks, and 33% were not happy with their prosthesis. Fast forward, an article just appeared within the last year or so, of 1,700 patients surveyed, 44% were not happy with their prosthesis. The comfort, skin irritation, poor quality of life, I think those type of large scale outcome studies are quite telling. Yeah, that's a great point, Dr. Dillingham. So, you know, the flip side to that could be, we could be looking at research projects across multiple centers that start looking more at the interventional outcomes. We know there's a problem. Let's say we can figure out a common intervention or a common theme. How do we actually take that forward? Go ahead, please. Sorry, yeah, we have a comment in the chat regarding reimbursement. Are you having issues with insurance coverage for basic prosthetics and replacement prosthetics after the initial one is worn out or broken? The answer to that is yes and no. Yes, we do have challenges, but I think if we do detailed documentation, I've been at Penn State again two years, I have had maybe two denials in two years, and we see a substantial volume of people. And the reason is we spend a lot of time in the clinic, talking with people and documenting all of it. So we'll go through prior history, current history, anticipated function, but also very specifically goals and expectations. So sometimes it is a matter of talking to the patients and not offering the most expensive device there is, but recognizing that there may be challenges with insurance. And let's start with something that applies more to the upper lung than it does to the lower lung. And then we always have the prosthetist present in clinic. If they can't attend in person, we get them on phone to make sure that they are part of the conversation. So any challenges that they have on their end, we are able to address that at the same time, so there's no back and forth. We have only a minute left, so I'm actually going to just run through the last couple of slides. And this is next steps. We will post a summary of the insights from this meeting. It'll be a brief summary over the next couple of weeks. All of us will get together and we'll post a summary on PhysForum. We are including our email addresses, so please reach out to us with any questions and thoughts. And we will continue the conversation at the National Assembly. This conversation is an ongoing conversation. We hope to continue to keep it going and get more people interested in the field. We are a very small subspecialty of a very small specialty. We really want more people to be able to offer better care across the country, not just at the big centers where we are, but across the country. So we'll continue the conversation at the National Conference. And then one final survey for you, if we can put that up. And with that, thank you very much for your time and attending today. Really appreciate it. Thank you for hosting and leading it. Absolutely. Thank you so much, everyone. The recording will be posted in the online learning portal and the member community before the end of the month. And we appreciate your ongoing support of AAPMNR and hope to see you at our annual assembly in Salt Lake City in October. Thank you, everyone. Thank you very much.
Video Summary
The Friday Lunch Member May session, led by Jordan Burkhart from AAPMNR, centered on member engagement and the clinical landscape of limb loss rehabilitation. Dr. Grover, alongside colleagues Dr. Vinay Vinodia and Dr. Marlies Gonzalez-Fernandez, directed an in-depth discussion on clinical education, service, and research concerning limb loss and preservation rehabilitation.<br /><br />Dr. Grover emphasized a coordinated care model at Penn State Health encompassing surgical consultation to prosthetic independence over three to four months. The conversation highlighted disparities in healthcare delivery and the significance of regional collaborations between healthcare providers and prosthetists. <br /><br />Education was a focal point, with Dr. Gonzalez-Fernandez and Dr. Vinodia detailing fellowship programs and limb loss rotations, emphasizing training’s role in developing leaders to enhance care nationwide. Advocacy efforts, including support groups and the "So Everybody Can Move" initiative, were discussed, emphasizing the value of peer mentorship and community involvement.<br /><br />Research opportunities within limb loss rehabilitation were explored, with Dr. Dillingham underlining the global need for accessible, affordable prosthetics. Collaborations, such as the newly established “Limb Rehab CARES” at Penn State, aim for interdisciplinary partnerships across clinical outcomes, engineering, and system science.<br /><br />The session concluded with a call for enhanced inter-institutional research collaborations and reiterated a commitment to fostering an inclusive community for ongoing discourse and optimization of limb loss rehabilitation practices, addressing barriers to equitable care and advocacy.
Keywords
member engagement
limb loss rehabilitation
clinical education
coordinated care model
healthcare disparities
fellowship programs
peer mentorship
prosthetic independence
research opportunities
interdisciplinary partnerships
equitable care
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