Integrating Occupational Therapy into Neuromuscular and Movement Disorders Care

Jess Holguin, OTD, OT/L

The role of occupational therapy (OT) is a vital aspect of the multidisciplinary care model for patients with neuromuscular and movement disorders. Understanding how OT can assist patients from their time in the intensive care unit to their rehabilitation is something that Jess Holguin, OTD, OT/L, spoke on extensively, helping to aid in recovery while also facilitating cost-effectiveness and eventual discharge. 

Holguin, who is an associate professor of clinical occupational therapy in the Chan Division of Occupational Science and Occupational Therapy at University of Southern California’s Keck Hospital, in Los Angeles, spoke with NeurologyLive on the current state of care within the space, providing his unique perspective on challenges that still need to be overcome, as well as recent advances. According to Holguin, “state of the art” advances for OT really involve “getting back to basics,” in that those in the profession assist patients in returning to the expected daily routines, life activities, and movement of human beings as a species. 

Holguin commented on his role at USC Keck Hospital, as well as desire to increase equity and access for patients, as receiving a diagnosis in this space can be challenging in general and is not “uniformly available to society at large.” Incorporating and accessing additional care and resources within the continuum becomes doubly difficult, Holguin said, adding that he and his colleagues continue work to increase opportunity and provide for populations in need. 

NeurologyLive: In your opinion, what is the current state of care within the neuromuscular and movement disorders space?

Jess Holguin, OTD, OT/L: The current take on the state of care in this space is that it's a tremendously large area—it's a huge blanket. So, even just beginning to figure out how to tailor comments is a bit tricky. I think it's accurate and useful to say that it is an area of significant growth, insofar as the growing awareness of all the different types of conditions and nuanced aspects within these different conditions, tied to autoimmune conditions, is just unlike any other area of practice that I've been associated with in my 25 years, as a neuro rehab specialist. 

In particular, the degree to which various diagnoses are now classified as subclassified and having a greater understanding of what can be done, but also that which remains unresponsive to current medical approaches. It opens a door to therapies—allied health professionals broadly—but from my particular perspective and an occupational therapy perspective, to be able to provide unique aspects of care that look at not only adaptation to [a patient’s] current state, but remediation, when possible, to protect against all the capacities that are currently suffering from the diagnosis.

Do you believe that OTs are effectively utilized within the comprehensive multidisciplinary care model?

I think that the multidisciplinary care model is particularly effective, in that I guess that's an inarguable point, but it's one that is very well in place at USC Keck Hospital as an academic medical center. We tend to have programs and emphasis that might not be standard of care elsewhere. So, we're a bit spoiled in that regard.

What I do know is that there is a greater awareness of having occupational therapy weigh in throughout the continuum, from ICU all the way through outpatient surveillance, monitoring of various diagnoses. Even knowing that research has shown, the early intervention of occupational therapy has been shown to be cost effective in terms of its capacity to help with overall management of care and discharge, facilitating discharge, as well as maintaining quality of life. 

Outside of the hospital, I know that depending on the diagnosis—because this is a very broad area—that there are some model, clinic-type setups. For instance, I'm a founding member of the USC ALS (amyotrophic lateral sclerosis) clinic, led by doctors Said R. Beydoun, MD, and Leila Darki, MD, where we have been able to work with multiple groups. Of course, we have our physicians—which are neurologists and movement specialists—occupational therapy, physical therapy, speech, respiratory, nursing, dieticians, the ALS national representative and of course, our social workers and assistive technology vendors. We have the chance to meet and to initially meet with patients in clinic face-to-face, but with the advent of COVID-related changes, we've transitioned fully to doing these clinics via Zoom. Being able to provide this multidisciplinary perspective has, has served as a model for other clinics. 

Outside of ALS, it’s actually become a center of distinction, but it's also been a model that's being adopted and modeled—for instance, our CSF [cerebrospinal fluid] Diversion Center, which is a newer offshoot of different excellent work being done by our neurologists and neurosurgeons.

Are there any advances in rehabilitation or care over the past 5 years that you consider noteworthy? Have any been integrated into your care for patients on a day-to-day basis?

That's a little more of a challenging question to answer. I would say that the advances in the last 5 years tend to be more medical in nature, and those, of course, are going to be specific to the diagnosis in question. From an occupational therapy perspective—I'll throw this out as an overarching organizing thought. For those that are more or less familiar, occupational therapy looks at all the stuff you do in your daily life, from the basics like dressing and grooming all the way to the most complicated stuff you do at home in the community, to get your vision, your thinking, your balance, your coordination, and how all those things come together to be able to help you live your life. In the presence of any type of disease dysfunction disorder, we come in and we assess the capacities of patients, and we take into account the expected course of the disease, integrating—to answer the question—whatever care is going to be provided through the medical model and in facilitative recovery or maximizing quality of life, if recovery isn’t to be expected. In doing so, we look at how the patient's current capacities and their available resources—be it their resources, in terms of their ability to do things [or] support within their network, to be able to remove barriers toward performance and safety and wellbeing. 

There's nothing that comes to mind in terms of [a] recent breakthrough in research or therapeutic, that's been developed in terms of how things are provided, and one reason for that is occupational therapy’s approach to assessing and treating in some sense is timeless, even in the presence of the most cutting-edge advancements in understanding. It boils back down to the way in which we participate in our daily routine—the things that we take for granted, the meaningful and the mundane—our nervous system and our bodies are organized to be able to participate in those. So, in a sense, “state of the art” is and will always be: How do we go about performing that which we as a species are designed and required to do?

A good example is, say you were looking at the most advanced perspectives that we currently have on neuroimaging, neuroinformatics, informed capacities to think and to move—rather than doing some type of computer-based game that doesn't have any real tie to daily life activity, occupational therapy emphasizes the need to be able to recruit network function down to the very structures through the white matter and gray matter connections that were formulated in response to experience, and we create a series of approaches to participate, harnessing that predisposition, according to organization and life demand. It’s a circuitous answer, but it's actually very tight and accurate in terms of the very heart of how we approach innovation, reinfusing whatever is going to be from the medical model into this the structure through which we provide care.

What are the current challenges or hurdles that still need to be overcome? What is presenting an obstacle for these patients?

Great question—from my perspective, and I know I don't stand alone in this, there's always an issue of equity and access. When it comes to, number one, being able to get into see a physician to receive a diagnosis of what is otherwise a very complicated area of medicine, it's not uniformly available to society at large. Among those that do have the benefit of perhaps getting a diagnosis, there's no built-in established, well-functioning system to make sure that people get the equal amount of care and resources across the continuum of their recovery or ongoing survival, so I would say a challenge to overcome [are all] types of that. One is to look at, within movement disorders and neuromuscular disorders, people also experience neurocognitive changes that are often missed. There are certain diagnoses where it's understood to be inherent and key to, or co-presenting to, the more overt movement-related issues, but there's a subgroup of patients that suffer in silence. The result of a system that is inadequately prepared to detect, to treat, and to surveil long-term, [is that it] sets people up for a subsequent lifetime of potentially unnecessary suffering. My current work with my colleagues at USC Keck does target these populations in need and the opportunities for innovation to be able to provide care early and throughout the course of their needs.

Transcript edited for clarity.