Multidisciplinary Clinics in Neuromuscular Medicine (Peripheral Nerve and Motor Neuron Disorders October 2023)

Educational Objectives

The goal of this program is to improve management of neuromuscular disorders using multidisciplinary care models. After hearing and assimilating this program, the clinician will be better able to:

1. Cite differences between multidisciplinary and interdisciplinary care models.
2. Identify patients who are likely to benefit from a multidisciplinary care model.
3. Overcome the challenges of implementing and advocating for multidisciplinary care models in health care.

Summary

Multidisciplinary Clinics in Neuromuscular Medicine

Dr Jones: This is Dr Lyell Jones, Editor-in-Chief of Continuum Lifelong Learning in Neurology. Today, I’m interviewing Dr Terry Heiman-Patterson on multidisciplinary clinics in neuromuscular medicine, which is part of a Continuum issue on peripheral nerve and motor neuron disorders. Dr Heiman-Patterson is a Professor of Neurology at the Lewis Katz School of Medicine at Temple University in Philadelphia, Pennsylvania. Dr Heiman-Patterson, welcome. And thank you for joining us today.

Dr Heiman-Patterson: Thank you for inviting me. It’s really a pleasure to be here.

Dr Jones: As some of our listeners may know, but as a little bit of additional background, Continuum is well known for its clinical reviews of neurology topics. With this month’s issue on peripheral nerve and motor neuron disorders, I’m happy to share with our listeners that we are continuing a relatively new article category called “Selected Topics in Neurology Practice,” which includes articles on nonclinical topics that are relevant to our profession. This article by Drs. Kelly Gwathmey and Terry Heiman-Patterson is the latest in that section, and I can’t think of a better topic to complement this issue. And before we get into the details of the article, Dr Heiman-Patterson, I have a disclosure, or maybe it’s kind of a confession. A large part of my own clinical practice here at Mayo Clinic is working in our own ALS clinic. And despite that, I learned something I didn’t know, right from the first section of your article, which is, there’s a difference between multidisciplinary and interdisciplinary clinics. What’s the distinction, and why does it matter?

Dr Heiman-Patterson: Yeah, well, there is a slight distinction, although we typically use “multidisciplinary” when we probably should use “interdisciplinary.” But multidisciplinary simply refers to, you know, professionals of multiple disciplines working in the same space seeing folks, whereas interdisciplinary care refers to the same thing, multiple specialists in different areas working together in the same area, but in a more coordinated fashion, if you think about it, because typically, the treatment plan will be formulated by the entire team at the end of the session, with usually the physician facilitating as a member of the team. And that’s pretty much what we all do in our multidisciplinary clinics. But yet, rather than calling them interdisciplinary, we refer to them as multidisciplinary. And that’s really been carried through in the literature. And when I read multidisciplinary, that’s what I’m thinking, is the sort of standard that somebody is discussing. In either case, the goals are the same. And that’s to be proactive, rather than reactive, in the treatment and interventions, and to provide a really global approach to patient care and longitudinal care over the course of a lifetime, or lifetime with disease.

Dr Jones: That’s a great summary, and for the purpose of this interview, we’ll do the same thing. When we say multidisciplinary, I think we’ll probably be thinking aspirationally about interdisciplinary, because I think it is that collaboration that makes those clinics so successful. And I think most of our listeners have a general sense of how these interdisciplinary clinics work. But could you share with our listeners some of the neuromuscular disorders that are commonly cared for in this model?

Dr Heiman-Patterson: Well, I think ALS without saying, Duchenne muscular dystrophy, of course, is the classic pediatric disease, but really any of the neuromuscular diseases that have disability — the limb-girdle dystrophies, myotonic dystrophy, distal muscular atrophy, SMA, you know, spinal muscle atrophy. Really, any of the diseases that have multiple needs, physical therapy and occupational therapy. And certainly those diseases with extramuscular involvement, like myotonic dystrophy where you can have heart, pulmonary — that’s the kinds of diseases that benefit from a multidisciplinary one-stop approach.

Dr Jones: So, we take care of a lot of chronic disorders in neurology and in neuromuscular medicine. What is it about these disorders specifically that make them so well-suited for multidisciplinary care models?

Dr Heiman-Patterson: Multiple needs is really the bottom line. So, it’s usually folks with really disabling weakness, and lots of other outside-of-the-muscle symptoms. In other words, pulmonary involvement, cardiac involvement, emotional depression. Then there’s also, in the genetic disorders, the need for genetic counseling, the need for palliative care. So it’s this multiple needs that these folks have that make them ideal. And in this way, you know, one-stop shop, a single visit, they see numerous specialists in one stop. Remember, if they’re really disabled, travel to outside, you know, to multiple clinic visits, and you’re going to lose some of those, right? If you have one-stop shop, it’s convenient, it reduces the burden, and it enables the health care professionals taking care of that person to actually be in the same place and talk about it. So, it really is the optimal way to develop care plans, and, in that way, optimize the quality of life, the care, of individuals with multiple needs.

Dr Jones: Got it. And that makes certainly a lot of sense for these populations, especially when other systems come into play, right, like ventilatory support, or, as you mentioned, maybe they need social work support, or other specialties. And I think you have a friendly audience here, this is something that I truly do believe is important for patients with chronic neuromuscular conditions. But we also know it’s not necessarily easy to set these up. We have lots of good reasons to implement these clinics. But in your experience, what are some of the barriers to setting up these multidisciplinary clinics?

Dr Heiman-Patterson: Well, there are lots. One is getting everyone in the same place at the same time, having the space for multiple disciplines. Typically, you have physical therapy, occupational therapy, speech-language pathology, nutrition, respiratory therapy, genetics, social work, case management, a nurse. And in some cases, we even have our research coordinators and pulmonologists involved. And, you know, in the pediatric clinics, where there’s a lot of cardiac involvement, for instance, in Duchenne, you might include a cardiologist. So, that takes a lot of space and a lot of organization. And then there’s the cost. This is sort of the elephant in the room, that the reimbursements don’t cover the cost of these clinics. And there’s been some research done on this. But there needs to be more just showing, demonstrating, on the one hand the value, the value added in terms of quality of life, survival, and even cost savings, like reduced hospitalizations, compared to the deficits that people work at to implement these. And so, for instance, we recently completed a survey, it was a simple survey of over 60 ALS centers, and, let me say that only 16% of clinics could say they were not losing money, that they broke even. Almost 50% clearly knew they were running at a deficit, and the rest kind of didn’t know one way or the other, and I suspect it’s because they were afraid to ask. But we all know that it’s expensive to run a multidisciplinary clinic. We also know that we need to advocate for this, but we need the data to advocate for this, which is that, you know, one side of the equation, which is that it really does improve quality of life, survival, function, and reduce hospitalization, and thereby reduce cost.

Dr Jones: So that’s a good note to self, right, we should be thinking about how we can articulate this. And unfortunately, it does often come down to, like, if you can solve the logistical problems of getting the room and getting all the schedules aligned, you do have to make a financial argument to this. And this may not be an answerable question, Dr Heiman-Patterson, but I mean, do we know how many institutions aren’t setting these clinics up because of these barriers?

Dr Heiman-Patterson: To be quite frank, I don’t know. But I do know that it is difficult. And, for instance, in ALS, we know that not all hospitals have multidisciplinary clinics for ALS folks. And I’m sure a lot of it is just what you said, the logistics coupled with the reimbursements not adequately covering the cost of having that multidisciplinary clinic. But no, I’m sorry, I don’t know.

Dr Jones: Yeah, maybe it’s something that we should survey, how many places would have a clinic if they could resolve some of those financial and logistical barriers. And you’ve already touched on this, Dr Heiman-Patterson, but when you think about the disciplines that really need to be reflected in an interdisciplinary clinic, obviously, it may vary according to different disease types, but what are some of the key professionals that you need to have involved in the clinics for these patients?

Dr Jones: So, some of the important folks, in addition to the physician, would include those folks who would be maximizing function. I think this is really a critical need. If you have people who have weakness and are disabled, you want to maximize their function and make them as independent as possible, and that means physical therapy and occupational therapy. In addition, if there’s involvement of speech or swallowing, you need your speech-language pathologist, and they can help teach strategies to swallow better, to preemptively discuss voice banking. You know, for us in ALS, we talk to our patients about voice banking and set them up with communication devices, Eyegazes, and then simple text-to-speech apps on the phone. Then of course, we have respiratory therapy, and, again, critical in neuromuscular disease. Most folks as they progress will get respiratory muscle involvement, so we’d like to teach them some strategies like breath stacking, and also intervene at the appropriate time with noninvasive ventilation, teach them proper cough, Heimlich maneuvers, all of these things, talk to them about pulmonary toileting, so the respiratory therapist and pulmonologist become critical pieces. More than ever, genetics is playing a role, and having access to a genetic counselor and genetic testing becomes important. Case management — I think that we all understand that that is actually, we want to implement all the plans. I want to get that power wheelchair, I want to get a home health aide into the house to help with care. Well, we need case management to pursue the insurance and to make sure that we can get those situations set up. And so, I think that case management social work may play the most important need. And then, you know, depending on the disease, you may need cardiology, you may need other disciplines available. But I think the core is that many of us who do ALS and other neuromuscular diseases are also very interested in clinical research, and so sometimes the research coordinator becomes an important participant in talking to folks about clinical research and how they can become active and join trials, and so forth. So, I think those are probably the core people.

Dr Jones: Right. And I know that the more people you add, the more complex the schedules get, we see that in our practice. But certainly, there’s a good rationale for each of them. You mentioned before, you know, many of these patients are challenged in terms of mobility. One of the only silver linings, maybe the only silver lining, of the COVID pandemic for our practice was, you know, the rapid development of telehealth. And I think many of us integrated telehealth into our interdisciplinary clinics pretty quickly. Here now, in 2023, when we’re recording this interview, to what extent are you still using telehealth in your multidisciplinary clinics?

Dr Heiman-Patterson: I always say the horse is out of the barn. So those folks who are really, you know, for me, ALS being the passion I have, if you will, as they get more disabled it really is difficult to get to clinic, and they’ve had the experience of being able to do telemedicine. And so they request it, and we’ve had to develop sort of a telemedicine scheduling system. So, you know, we have specific half-days we do telemedicine, and it’s set up for us. We set it up as a multidisciplinary visit. So typically, it’s an hour to an hour and a half, and in the first half-hour I’m on, and then my team joins me, and everybody has a link, and everybody’s on the line at once, to go over their specific question. So, occupational therapy may be asking about activities of daily living, and physical therapy will be asking about mobility, and so forth. And so we try to give as high a quality as we can, but as we all know, there are challenges with a telemedicine visit. I can’t examine the patient. I’ve been using an exam designed by Christina Fournier at Emory for the motor exam on a telemedicine visit. It isn’t the best, but when you consider that we really, by that time, are really doing a functionally-driven, symptom management-driven evaluation, I guess it works okay. And patient satisfaction is high with it, even if the physician satisfaction isn’t as high. I don’t feel like I give as good a visit, but the horse is out of the barn and people are asking for telemedicine, especially when they are more advanced. I also find it a little difficult to have those really important discussions. The hospice, trach, you know, those kinds of discussions with ALS patients as we get to that point. And certainly, I’m more likely to need to have them in people who are getting telemedicine, because they’re more advanced. So it isn’t, to me, optimal, but it is something that patients really enjoy, or prefer, when they get to that point.

Dr Jones: I can see the trade-off there. So do you get the whole team, your whole interdisciplinary team? Do you get them online with the patient at the same time?

Dr Heiman-Patterson: Yeah, so as I said, I’ll go on first, I’ll spend a half an hour, and I’ll sort of identify the key problems and also discuss medication, things like that. And then when the team joins, think of it as a big Zoom, and then the team comes on, and then I’ll summarize what I see as the major issues for each discipline. I’ll say, “Hey, they’re interested in a power wheelchair and a hospital bed,” to my physical therapist, and to my occupational therapist I might say, “Hey, they need some equipment, toileting has become a problem,” and my speech language-person I’ll say, “Hey, you know, they’re coughing more with eating, they’re losing some weight, we discussed a feeding tube, perhaps you could review a chin tuck and some strategies with them because they’re not ready for a feeding tube, they don’t want a feeding tube yet.” And so, you know, we do it like that. So I kind of summarize the bullet points that I want each of the disciplines to think about, and it works out well. And then our PALS, our patients with ALS and their caregivers, usually will add to that, or discuss what their needs are again so that the disciplines can hear about it.

Dr Jones: Well, and not only are you using teamwork, they get to see that teamwork actually happen. I think that’s probably something they really appreciate.

Dr Heiman-Patterson: They do. They really enjoy it. And we do things in a very special way. You know, we have a very close relationship with our PALS and caregivers, and we like to say we’re your extended family. So, usually the first few minutes are how are the kids, what are you doing, you know. And so they feel like they have friends in their living room, only it’s on the computer screen.

Dr Jones: There’s so many benefits to this model. We touched on it a little bit earlier, it seems like it could be applicable to the management of other patients with other chronic disorders, chronic neurologic disorders, and I’m aware of a few other interdisciplinary clinics that are in the neuromuscular world. Do you ever bring in patients who you really think might benefit, but they don’t have the exact diagnosis that goes with that clinic?

Dr Heiman-Patterson: Yes. I mean, for instance, we see a lot of other motor neuron diseases in our ALS clinic. And quite frankly, anyone in our muscular dystrophy clinic, you know, we obviously see all the neuromuscular diseases, and if, in fact, there’s someone who really would benefit, we bring them in. We’ve also, here at Temple, we’ve been working on the concept of multidisciplinary care for all of the neurodegenerative diseases. So, you know, we’ve created three pillars, and we’re in the process of developing this with, you know, dementia, movement disorders, and neuromuscular ALS, where we provide those multiple disciplines for each of those clinics so that people can benefit. And obviously, the other sort of neurodegenerative disorders require a different set of disciplines, but yet benefit from multiple people being available. Certainly, social work is needed across the board, mental health is needed across the board. And you know, we also do mental health, I didn’t even mention that. That’s really important. We do a lot of our mental health through home visits as well as in the clinic, but sometimes you need a longer period of time for a visit, for counseling. And certainly, in some instances, like movement disorders, Parkinson’s can certainly benefit from physical therapy, occupational therapy, and speech as the disease progresses. So yes, very much so. I think this paradigm is really important to any disease that is progressive and disabling.

Dr Jones: Yeah, and I’m curious, Dr Heiman-Patterson, about where do you see multidisciplinary clinics going in the future. One thing that comes to my mind is, as you just mentioned, you know, patients who have dementia certainly could benefit from a multidisciplinary model. But now that we have anti-amyloid monoclonal therapies, which require pretty extensive pretreatment evaluations and posttreatment monitoring, it seems like this could be pretty portable to other disorders. What else do you think will be in the future for these multidisciplinary clinics?

Dr Heiman-Patterson: Well, the first thing is that we innately know, right? You and I know what the value is when every day we go into that clinic, and we take care of people, and we get the thank you’s back. And we know what that meant to that family to get this kind of multidisciplinary care. But we have to demonstrate that. We have to demonstrate it to the satisfaction of payers that the reimbursements start coming. I mean, the Academy of Neurology already recognizes the value, and it’s part of our core quality measures, right? So that has to be made universal for other chronic diseases, that these clinics are recognized as a real added value to patient care, quality of life, and even, I think, it probably even improves cost benefit by having a team that somebody can call rather than going to the emergency room or getting hospitalized when things could be taken care of with the appropriate interventions with their care team. And so I think in the future, we need to have research demonstrating that care and advocacy for making this something that’s expected of care, that it’s an expectation by payers that their enrollees get this kind of quality care rather than, you know, one visit to a doc and referral to PT and referral to OT in a busy clinical practice where someone doesn’t spend as much time with the participant as we do in our multidisciplinary clinics. So I think it needs to become sort of entrenched in the culture of good care.

Dr Jones: Yeah, no argument here from me. Caring for patients with a progressive disorder, many of these are currently fatal, this can be taxing professionally and personally for the members of that care team. Tell us, Dr Heiman-Patterson, what drew you to this work, and what do you find most rewarding about it?

Dr Jones: It’s very simple in my mind. I went into medicine to make a difference. And I never said I was going to cure everybody. I said that my job was to care for people and make a difference. And I can’t see where there’s anywhere else I would want to be than making a difference to people living with ALS. And it is so rewarding at the end of the day when a family who’s been through hell, right, they’ve been through the worst-case scenario, and they turn to you and they say “Thank you for all you did.” I just, I just can’t see doing anything else.

Dr Jones: That’s very well said. I can’t think of a better way to put it. So Dr Heiman-Patterson, thank you for what you do. Thank you for joining us today. And thank you for such an expert article, and such an approachable discussion, on the role of multidisciplinary clinics in the care of our patients with neuromuscular disorders. I think a lot of powerful messages to take away. So, thank you for being here today.

Dr Heiman-Patterson: Thank you for having me.

Dr Jones: Again, we’ve been speaking with Dr Terry Heiman-Patterson, whose article with Dr Kelly Gwathmey on multidisciplinary clinics in neuromuscular medicine, is part of our latest Continuum issue on peripheral nerve and motor neuron disorders. Please check it out. And thank you to our listeners for joining us today.

The material presented in Continuum Audio has been made available by the AAN for educational purposes only and is not intended to represent the only method or procedure for the medical situations discussed but rather to present an approach, view, statement, or opinion of the speaker(s), which may be helpful to others who face similar situations. Opinions expressed by the speakers are not necessarily those of the AAN, its affiliates, or the publisher. The AAN, its affiliates, and the publisher disclaim any liability to any party for the accuracy, completeness, efficacy, or availability of the material contained in this program (including drug dosages) or for any damages arising out of the use or nonuse of any of the material contained in this program.

Readings

Gwathmey K, Heiman-Patterson TD. Multidisciplinary clinics in neuromuscular medicine. Continuum (Minneap Minn) 2023;29(5, Peripheral Nerve and Motor Neuron Disorders).

Disclosures

For this program, the following relevant financial relationships were disclosed and mitigated to ensure that no commercial bias has been inserted into this content: Dr Heiman-Patterson has received personal compensation in the range of $500 to $4999 for serving as a consultant for ITF Pharma, Mitsubishi Tanabe Pharma America, and Samus Therapeutics, Inc, and on scientific advisory or data safety monitoring boards for Amylyx Pharmaceuticals, Biogen, Biohaven Ltd, Cytokinetics, and Mitsubishi Tanabe Pharma America.

Unlabeled Use of Products/Investigational Use Disclosure: Dr Heiman-Patterson reports no disclosure.

To view disclosures of planning committee members with relevant financial relationships, visit: legacy.audio-digest.org/continuumaudio/committee. All other members of the planning committee report nothing to disclose.

Acknowledgements

CME/CE INFO

Accreditation:

The Audio- Digest Foundation is accredited by the Accreditation Council for Continuing Medical Education to provide continuing medical education for physicians.

The Audio- Digest Foundation designates this enduring material for a maximum of 0.00 AMA PRA Category 1 Credits™. Physicians should claim only the credit commensurate with the extent of their participation in the activity.

Audio Digest Foundation is accredited as a provider of continuing nursing education by the American Nurses Credentialing Center's (ANCC's) Commission on Accreditation. Audio Digest Foundation designates this activity for 0.00 CE contact hours.

Lecture ID:

CA120513

Expiration:

This CME course qualifies for AMA PRA Category 1 Credits™ for 3 years from the date of publication.

Instructions:

To earn CME/CE credit for this course, you must complete all the following components in the order recommended: (1) Review introductory course content, including Educational Objectives and Faculty/Planner Disclosures; (2) Listen to the audio program and review accompanying learning materials; (3) Complete posttest (only after completing Step 2) and earn a passing score of at least 80%. Taking the course Pretest and completing the Evaluation Survey are strongly recommended (but not mandatory) components of completing this CME/CE course.

Estimated time to complete this CME/CE course:

Approximately 2x the length of the recorded lecture to account for time spent studying accompanying learning materials and completing tests.