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Dr Kathy Zackowski Discusses the Importance of Rehabilitation Research and Trials in MS

Kathy Zackowski, PhD, National MS Society, expresses the inherent value of quality rehabilitation trials for broadening clinical understandings of multiple sclerosis (MS) and bettering patient outcomes.

Kathy Zackowski, PhD | Image Credit: National MS Society

Kathy Zackowski, PhD | Image Credit: National MS Society

Kathy Zackowski, PhD, National MS Society, chaired a session at the Americas Committee for Treatment and Research in Multiple Sclerosis (ACTRIMS) 2024 annual meeting titled, “Rehabilitation Without Borders.” The goal of the session was to explore avenues for furthering rehabilitation trials and the mechanisms at work in rehabilitation in multiple sclerosis (MS).

Zackowski joined The American Journal of Managed Care® (AJMC®) to dive deeper into this subject. In this interview, she discusses patient variability, barriers, and future progress in rehabilitation trials in MS.

This transcript has been edited for clarity and length.

AJMC: How do rehabilitation programs for patients with MS consider individual symptom variability, disease progression, and functional limitations?

Zackowski: That's kind of the hallmark of MS, right? There's variability, which makes it even more important that rehabilitation is given by a multidisciplinary team. From physical therapists, to occupational therapists, to speech language pathologists—there are also specific physicians called physiatrists that are specific to rehabilitation and nursing—just to name a few.

What happen is, if a patient comes to one of those experts, they will have an evaluation and the evaluation allows that expert to figure out which particular intervention is most effective, where are the particular weaknesses, and where are the strengths. They explore these questions in addition to talking to the person with MS and making sure that their goals are taken into consideration. That essentially speaks to what rehabilitation can offer people.

AJMC: Can you discuss specific MS rehabilitation barriers and how these barriers impact the progress and success of MS rehabilitation interventions?

Zackowski: There's a large number of barriers, and some of them are MS specific, and some of them are not. One thing about rehabilitation that is different than taking a medication is that it requires a lot of effort. You not only often have to get to a place to do it but you have to put in effort and energy to do that. So often, barriers are just getting to the place where rehabilitation is offered and making sure you have family and caregiver support to ensure that you get there.

When you are given one rehabilitation intervention or another, because this requires effort, people feel more fatigued. Fatigue is a really big symptom, a really important symptom that limits people's activity. So, it's really important to make sure that people with MS understand that when you start rehabilitation, you might feel more fatigued initially. But this is kind of a long game. The idea is that these interventions should—and there are interventions that specifically can—influence the amount of fatigue you have. So, give it a chance before you give up.

Other barriers that I think of are bowel and bladder issues, which are really common. This can make it difficult for people to want to leave their home. So, being aware of that, scheduling things appropriately so that rehabilitation can be done in a comfortable way, and being aware that there is research trying to improve our techniques for addressing bowel and bladder issues.

Barriers that might not seem so obvious might be just the weather. So, keep in mind that people with MS, when it's really hot and humid, they have a really hard time moving around. They get more fatigued, more exhausted faster. If it's really cold, sometimes people who have spasticity can have more issues.

Those are all barriers just to getting yourself to the rehabilitation clinic. With COVID, the use of telehealth has really expanded hugely, and so there are programs that are given or offered via telehealth. But the barrier there is, that person needs to have a computer and needs to have access to the internet. So sometimes that makes it really difficult.

And not to forget that insurance limitations are often a barrier. Often, insurance will cover a certain number of treatments for people with MS in terms of rehab. So, it's important that the person with MS understands that rehab professionals can provide guidance for understanding how many sessions you might have and being able to plan for that so that you can use those sessions as effectively as possible.

AJMC: In your opinion, what should be future research priorities to overcome MS rehabilitation barriers and unmet needs?

Zackowski: There’s really a big need for rehabilitation research. The first thing that comes to mind for me is really a better understanding of the dose that we need. If I use exercise as an example: We all know we should exercise, and people with MS are no different really; they need to be active. But we don't really know what exact type of exercise is best for one person with MS compared with another. We don't have a good handle on the intensity or even the amount of time. All of those things make it hard to prescribe exercise, and this goes the same for cognitive rehabilitation or self-management strategies.

Other things that I think the field needs are pragmatic trials that really can evaluate these complex health interventions. They're complex because we're saying we need to do exercise, which requires often going outside, increasing your heart rate, all of these things that can require our bodies to work in a particular way. So, making sure that we design trials so that they can be done in a way that will allow us to answer the question we're interested in, and are done in a of cost-effective way.

Also, I think it's important that we use the digital tools that are now available. So many people are wearing a Fitbit or some kind of digital tool that allows us to quantify how much movement they have. That might be a way that we could monitor people from afar, and that's being done a little bit. But really being able to provide rehabilitation virtually and then be able to have objective data, quantitative data, from these tools could be a really big game changer.

Last, I really want to put a plug in for just encouraging collaborative studies; collaborative in terms of working with other experts in the field so that movement experts or physical or occupational therapists work with immunologist and geneticists to try to understand how to design trials that allow us to get to some of those foundational and mechanistic questions. Also, collaborating with people who have MS, making sure that trials are designed in a way that offers the opportunity for people to participate in a comfortable way. And then including funders for these studies to allow them to understand the rationale and the importance of rehabilitation trials.

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