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A new feature on NeurologyLive®, IJMSC Insights offers a closer look at the latest research and the people behind it from the community of the International Journal of Multiple Sclerosis Care (IJMSC) and the Consortium of Multiple Sclerosis Centers (CMSC).
In the March/April 2023 issue of the International Journal of Multiple Sclerosis Care (IJMSC), the continuing education (CE) article was “Online Delivery of the Individualized Reduction of Falls Intervention for Persons With Multiple Sclerosis Who Use a Wheelchair or Scooter Full-Time: A Pilot Study.” The paper investigates the feasibility and effectiveness of an online fall prevention and management intervention designed for individuals with multiple sclerosis (MS) who use a wheelchair or scooter full time. Based on a previous in-person intervention, Individualized Reduction of Falls-Online (iROLL-O) features 6 weeks of asynchronous (prerecorded videos and written activities) and synchronous (online meetings) components. Although it did not reduce incidents of falling, iROLL-O did reduce fear of falling and increase participant knowledge of fall management and prevention strategies. In interviews, participants highlighted increased environmental awareness and enhanced self-efficacy skills as valuable intervention outcomes.
As a CE article, the authors highlighted that there were no other evidence-based online programs designed for individuals with MS who use a wheelchair or scooter full time to learn about fall prevention and management. Awareness about iROLL-O could help clinicians provide more comprehensive care to this underserved population.
Laura A. Rice, PhD, MPT, ATP, was the corresponding author for the IJMSC article. She is an associate professor at the University of Illinois, where she holds an appointment in the Department of Kinesiology and Community Health and is an affiliate at the Beckman Institute. She is also a leader in administrative areas, including as the associate director of the Center for Health, Aging, and Disability.
Dr. Rice’s research primarily revolves around enhancing the lives of individuals with physical disabilities. She focuses on the prevention of secondary injuries and the management of secondary impairments that often accompany physical disabilities. Her work is aimed at not only improving the quality of life for these individuals but also promoting their active participation in the community.
She sat down with IJMSC to talk about the popularity of the article and to discuss how physical and occupational therapy interventions and interventionists can play a part in comprehensive MS care.
Laura A. Rice: I think it was appealing because there is such limited research on this topic. In general in the field of multiple sclerosis (MS), when we look at the research, it does mostly focus on individuals who are ambulating. Unfortunately, I think there’s still this thought in the MS world that using a wheelchair is a failure or kind of the end of the road. But that’s simply not true. That thinking limits the research that is done and the training that clinicians get as well. I think this would be interesting to clinicians because they finally have some resources to be able to support their clients who use wheelchairs or scooters.
I hope this can be a really useful resource for clinicians. We’re definitely in the early phases as we still have small numbers and there’s a lot more research that needs to be done. But I’m really hoping that this will become a useful resource that clinicians can go to if they do have a client living with MS who uses a wheelchair or scooter. We’re designing the program to be very modular, so that a clinician can say, okay...here’s a great resource and in the future it will be an online program so it’ll be accessible to people living anywhere, as long as they have an internet connection. And clinicians can certainly use aspects of the program, [for example,] if they have a client who is having trouble with falls during transfers, they can hone in on the transfer training section. We are really hoping that it’ll be an evidence-based resource that clinicians will be able to utilize in a variety of different formats.
We had started the program in 3 locations, Champaign, Illinois, where I’m located, a fairly rural region, but then also Chicago and Atlanta, 2 metropolitan areas. Regardless of location, we got feedback from participants that it was difficult to join the program. It is 6 weeks long [and] each session is 2 hours so it is a pretty good time commitment. Participants were saying, “I have to get there and then do the program and then go home.” We know that fatigue is a common symptom associated with multiple sclerosis and participants often mentioned the accessibility of the program. It was held in very accessible locations, [with] ramps [and] automatic doors, but just having to travel and get there was challenging for our participants.
Probably the biggest hurdle was just trying to do something really big and new during the early days of COVID. Just managing life! As far as the program itself, we looked to best practices for online learning so we did have different frameworks that had already been established. Some other hurdles [were that] we had been doing quite a bit of in-person, hands-on training, things like transfer skills, wheelchair skills, [and] the exercise program as well. [We were] really trying to think through the best way to manage that [online]. I will say our program is not intended to teach new skills. The people who are participating, they’re already doing transfers, they’re already using their wheelchair on a regular basis. It’s a refinement of those current skills and that does lend [itself] well to online learning. There are previous instances of online transfer training programs and online wheelchair skills programs and, again, we could look at that literature and use those best practices to inform our program. Currently, we are encouraging our participants to engage with a physical or an occupational therapist in their local area, [especially] if they want to learn some new skills. We give them the language to use, like, “I want to learn how to do a sit-pivot transfer.” Then we encourage them to show the therapists. In the future, I would love to partner with...some local professionals, physical therapy (PT) assistants or occupational therapy (OT) assistants, maybe even home health aides. We could have somebody hands-on with the participants with expertise related to transfer training, wheelchair skills. We’d be able to provide the information remotely, but then have knowledgeable practitioners with the person [with MS] so that they can actually practice those [lessons] in a safe manner. I could see that [possibly] being a future iteration of the program.
I think one of the greatest aspects of being a PT or an OT is having that hands-on interaction with your clients. That’s so meaningful, so helpful. I don’t think we’re ever going to be able to replace that with online visits. I think what we can do is perhaps reduce the [number of] times that a person has to come into the clinic because it [can be] very challenging. Travel is hard for all of us. And if instead of going to therapy 3 days a week, maybe 2 days a week, it’s online discussion [or] learning techniques. I do...like things like exercise programs [that] can be done online, especially after a person learns the skills initially, but I think a hybrid model would be the best situation. People can do some activities online; they can engage with leading experts on these topics. But there’s always going to be a need to have some hands-on opportunities to practice skills, to get that deep, detailed, nuanced feedback from a PT or OT in the clinic. A hybrid model would be a good solution.
It’s been a unique experience. We were gearing up to move a lot of things online. COVID helped us to just do that a lot faster. I’ve been amazed by the things we can do online. For example, a project that one of my students did during COVID was to validate a seated balance assessment. If you would have asked me in 2019, “Oh, can we do that assessment online?” I’d have said “No way!” But my student was so creative; he really thought through all the different things that the participants would need to do. He developed great instructions for a care partner to be able to assist somebody so that we made sure people stayed safe. I really am amazed at the things that we can do online. And there’s a lot of really great opportunities that allow us to extend our care to individuals that, in the past, may not have been able to access high-quality care.
It’s very important to remember that this was an initial study. Probably the biggest thing is that we did not have a very long follow-up time with our study participants. In the future, we intend to follow people longer after they complete the program. Falls are such a tricky item; they’re multifactorial, so there [are] many things that come into play. We need a longer period of time with people having the knowledge [ie, longer intervention to include more follow-up time], and I hypothesize that that will translate into a reduction in fall frequency. For clinicians, I think everybody needs to critically evaluate any research they’re [reviewing] and be very clear with their clients and let [to] them know...what the findings show. Some of the things that we talk about in the program are not only how to prevent a fall, but how to manage a fall. After a person falls, what [should] they...do? Collectively, all of these things will help to improve the health and well-being of the study participant. I think looking at the overall benefits of the program is important. A reduction in fear of falling and increased knowledge are 2 important aspects of improving the overall health and well-being of an individual with multiple sclerosis.
We did a lot of qualitative research with this project. I love going back and looking at the quotes because there are so many things that our participants said that they were doing differently, that they were feeling, that don’t always translate into the quantitative findings. For example, a participant talked about how his daughter was on the swim team, and before [the program] he was very fearful of going to a meet that wasn’t at their home pool, but after the program, he felt more confident to get out. And I [thought] that’s exactly what I want want people to do. A big outcome measure [is] to look at community participation, [and] maybe that kind of little change [wouldn’t have] created a significant finding, but it sure was significant for that [particular] study participant. I think the qualitative findings are very important. Unfortunately, sometimes they’re not looked at as hard evidence of change, but I find them very significant.
The program is going to be called iROLL and our next step, our current work, is translating the program into an app-based system. Participants said they wanted to interact with the materials in a different way. They wanted more contact with their fellow group members and the therapist implementing the program. The app is going to be called iROLL-O+. We will start a usability trial to look at the functionality of the app in about 6 months or so and then we’ll actually be getting the program rolling, pun intended. We are also interested in doing a large-scale study with a larger number of participants, trying to be as diverse as possible, and following participants for a longer period of time so that we can better see the impact of education on things like fall frequency and community participation—both are things that take a bit of time to really manifest.
Thank you.