Using a Multidisciplinary Approach to Enhance Holistic Care for Patients With ALS

WATCH TIME: 4 minutes

EP: 1.Updates in Gene Therapy, Biomarkers, and AI Advancements for ALS Care Management

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EP: 2.Using a Multidisciplinary Approach to Enhance Holistic Care for Patients With ALS

Recent advancements in amyotrophic lateral sclerosis (ALS) research may reshape how clinicians understand and help patients manage the disease, with potential therapies slowly emerging that aim to target both genetic and cellular pathways. Alongside these strides, there seems to be a growing emphasis on a holistic care approach following diagnosis to offer additional support for patients throughout the disease course. Furthermore, genetic testing could become more valuable in guiding diagnosis and offering refined treatment decisions for patients. Together, these developments in the field might highlight a shift toward more comprehensive, individualized care strategies that can address both the biological and lived experience of patients with ALS.

In collaboration with The ALS Association, NeurologyLive^® recently held a roundtable discussion with a panel of ALS experts who talked about updates in ALS research that show potential to improve clinical care, including the expanding role of genetic testing and personalized treatment. The guest neurologists featured in this conversation included Bjorn Oskarsson, MD, associate professor of neurology at Mayo Clinic in Florida and director of the ALS Center of Excellence; John Novak, MD, neuromuscular specialist and director of the ALS Clinic at Ohio Health; Christina Fournier, MD, associate professor of neurology at Emory University and co-director of the Emory ALS Center.

In this second episode, the neurologists highlighted the important role that holistic, interdisciplinary care can play in managing ALS for their patients. During the conversation, the experts explained how addressing not only the physical symptoms but also the emotional, cognitive, and social needs of patients could improve their patients’ quality of life and long-term outcomes. Emphasis in the clinical discussion was placed on collaborative care teams, comprising specialists of different aspects of care, that could work together to align treatment goals of their patients and support them through every stage of the disease.

Transcript edited for clarity.

Isabella Ciccone, MPH: How do you approach providing holistic care for patients, and how does this impact their outcomes overall?

Christina Fournier, MD: I guess this is really where interdisciplinary care embodies how important this is as something that we all do in our own clinics. We're addressing the physical needs of the patient, but also keeping in mind their broader goals—needs that fall in the scope of neurology, but also outside of that.

Looking at a person as a person, not just a patient with ALS, and taking into account what's important for quality of life for this person, what’s important for their treatment goals—what are they looking to accomplish in the next weeks and months, and things like that. So I think the interdisciplinary model we use does this really well. We have a whole team of experts in all different fields such as physical therapy, nutrition, social work, research. And it’s not just all these people working in silos, but everybody collaborating to bring what’s at the forefront of that specific field to the patient’s care and just making sure that all needs are addressed as a team, keeping new updates in the forefront.

It works really well. I mean, we have data showing that outcomes are better for people with ALS who go to multidisciplinary care, and I think it's for the reason you asked it’s about taking care of the whole patient from a holistic standpoint and not just in silos. I think it’s one of the mainstays of what we do. And I think as much as the science advances, it’s still going to be equally important moving forward. So, I’m glad you asked about it, because I think it’s something we need to support and make sure that it stays in the forefront.

Bjorn Oskarsson, MD: When we talk about holistic care for a person, it is very much about their relationships, their family. We often involve the families very tightly in these discussions. And again, we try to find the right balance between supporting independence and providing support where needed, identifying those areas and divisions, and making sure people stay as independent as possible for as long as possible, while still engaging with their families and caregivers and achieving the goals that they have.

John Novak, MD: Yeah. I mean, if you look at the teams that we have in a multidisciplinary clinic, they’re basically covering the patient from head to toe, right? You have mental health, cognitive, speech, respiratory, all the way down to their physical functioning like their legs, their mobility. And I think that’s how you treat a patient holistically: you take all of that into consideration.

It's not just how bad your arm is, or your leg, or your speech. You really build a team around that. And so in these multidisciplinary clinics, that’s the goal. You can approach a patient with whatever they need, using the experts that you have. And then you're right, it’s all about their goals. It's about how they fit into their society, their community, their family. And what can you do for them to keep them living with ALS, not just having it. You really want to approach them from a standpoint of who they are, what they want to do, and who they want to be as they live with this disease.more approved therapies in the future. So, I think this is a big and important first step, and we're excited to see what comes next.

Bjorn Oskarsson, MD: I would normally echo that. Again, where we understand or see a cause of ALS, we have now shown that we can address it. So, there are people now living with ALS, some even getting stronger with ALS. It's a very hopeful time.

John Novak, MD: Yeah, I think those are probably the biggest things we've got, right? That's the newest thing. We are targeting therapies directly for genetic causes that will spill over into sporadic. We will learn how to deal on a molecular level much better with this disease and target it. I think the other big thing that I hope to see change is in biomarkers. I think biomarkers are a way to hopefully someday classify people physiologically—what's going on—and target those therapies toward that. But then also, it's accelerating our discovery of new drugs. We can look to see does this work in a person and not have to wait 2, 3 years to see how long they live, or 6 months. For some of these trials, maybe we can screen therapies faster and get them out to people quicker as we learn more.

Bjorn Oskarsson, MD: I think biomarkers for diagnosis have come a long way in recent times. We've had basically the complicated neurological exam as the tool that served us well for over 100 years. Electrophysiology of the lower motor neurons has been strong for a long time—we've been able to use that for quite some time. But now we also have imaging that is starting to get fairly reliable at picking up ALS—definitely the upper motor aspects of ALS. We have neurofilament light, which has made its entry into clinical practice. That helps us make a diagnosis quicker and make estimates on prognosis. Again, it isn’t the perfect measure, but it’s better than the lack of any measures that we had before.

Christina Fournier, MD: Along those lines, I think we're really early on using AI to help us with ALS, but I think we're starting to crack the surface on in this disease maybe, it's so complex in terms of mechanisms and clinical phenotypes and things like that—that we might be able to harness AI to kind of make sense of things that make sense to us clinically. I think we're only just beginning to use AI for the purposes of drug discovery and ALS subtypes and things like that. But I think it's a exciting field that we're going to see a lot more of as we learn to use AI in our favor.

Bjorn Oskarsson, MD: I guess we have our first AI applications for our patients with AI-created voices for patients who’ve lost their voice. We can now get a voice generated using very small amounts of old voice clippings. I mean, that’s the first AI use that I see helping my patients.

Christina Fournier, MD: It's very cool, this voice cloning. So, they take old voice recordings and create a voice that sounds like the patient did before they had any voice changes—using old recordings of their voice. And it's really good. I mean, the emotion in their voice, the way that they kind of pause and express things, and even the ums and the likes and things that were specific to the way they talked get captured in this voice clone. The one I just heard in clinic last week was incredible. It really was game-changing for the person I heard using it, because they lived in this multigenerational house with a big family and were still able to jump in and be a part of all that family interaction. So yeah, it's a cool example of AI for good in ALS. And like I said, I think it's only the beginning.

John Novak, MD: We just had a woman give a speech using that voice at a baseball game. And it was her giving the speech through her device. It’s amazing, through the microphone and everything. It was just like she was never affected. It was really, really moving. I think for their family too, it's a cool thing.