Matt Hoffman, Senior Editor for NeurologyLive, has covered medical news for MJH Life Sciences, NeurologyLive’s parent company, since 2017. He hosts the NeurologyLive Mind Moments podcast, as well as Second Opinion on Medical World News. Follow him on Twitter @byMattHoffman or email him at firstname.lastname@example.org
As the adoption of telemedicine rises, the ability to incorporate digital and telehealth-based therapies offers clinicians a unique opportunity to supplement the comprehensive care model.
The rapid adoption of telemedicine that has occurred over the course of the coronavirus disease 2019 (COVID-19) pandemic has shined an even brighter light on the already recognized care access challenges faced by patients with chronic, debilitating diseases such as multiple sclerosis (MS)—one that often requires repeat clinic visits and consults with a large team of health care professionals. With many of those visits now taking place virtually out of necessity, it has added support to the argument that there is a “clear and tremendous” need for more digital and telehealth-based interventions in MS.
This has long been the focus of clinical neuropsychologist Leigh Charvet, PhD, of the division of MS at NYU Langone Health in New York, who told NeurologyLive® that when these digital interventions are brought home to patients, clinicians reach a much broader spectrum of people living with MS—a highly important facet for research. Access to these resources, she said, underscores the demand for symptomatic management and rehabilitation, areas of treatment that often fall second to relapse prevention despite their immense impact on patient quality of life. To learn more about the digital therapeutic landscape and telemedicine’s place in the future treatment of MS, NeurologyLive® spoke with Charvet in an interview.
Leigh Charvet, PhD: My entry into this world was with cognitive remediation, which we know that we need a lot of training to do. That’s probably one of the early therapies that has very well designed and accessible computer-based or online-based training. That was really our first entry into this, to send people computers to their home and supervise them remotely to complete our first trial. They did 60 sessions over 12 weeks, so you could just imagine that that wouldn’t have been able to be done if they were coming to clinic. In general, with cognition, we also think of what a lot of times we call the “invisible symptoms” that have such a burden on day-to-day living for so many people. That definitely includes fatigue, and things like pain, and emotional distress is another huge component for many of us. Our approach has been to evaluate computer-based or app-based interventions targeting these symptoms remotely, and we do that because we can reach many more people and provide the adequate number of treatment sessions.
Our particular focus moved from that cognitive rehabilitation trial to evaluating the use of noninvasive brain stimulation, in particular, something called transcranial direct current stimulation (tDCS). That’s in the world of noninvasive brain stimulation therapies, but it can be portable and wearable. We knew that we could reach people in their homes, so we developed a whole protocol where we do live video visits to help people self-administer, with supervision, tDCS. The idea with tDCS is it may be therapeutic on its own. For instance, it is approved in many countries for the treatment of depression, but we’re particularly interested in its ability to boost rehabilitative outcomes. The idea is that pairing the stimulation while you’re doing a training activity may boost the benefit of the training activity. We took our cognitive remediation that we had established and then added tDCS to that.
That also brought us into the world of some motor rehabilitation. For instance, there is an established at-home hand exercise program to strengthen and recover hand function, where we’re actually adding tDCS to that right now in the clinical trial. We’re also very interested in types of exercise, physical therapy, and aerobic exercise at home paired with the brain stimulation to see if we can boost the benefit of that training activity.
We’re interested in its benefits for fatigue, in general. There are a lot of parameters on how to use it, and in our research program, we’re sending it home. And with our absolutely amazing patient participants who are true collaborators, we’ve designed a platform where we can reach people in their homes and have the high volume of sessions and sample sizes needed to really evaluate these emerging therapeutics. In that work, what we’ve seen is that people are able to do what would seem on paper to be very complicated procedures in their homes with supervision. We’ve learned how to take on the technical burden on our side, and then guide people to be able to do these therapies very successfully in their homes.
I think we’re pretty close to that, but there are a lot of these emerging therapeutics—and this is not specific to MS, especially as these things are computer-based—where there’s a disconnect between a provider or therapist telling a patient, “Here’s something that you can access that will help you,” and then the patient actually doing that. We all know that you should go to the gym every day, but if I don’t have a personal trainer or somebody watching me, I’m not going to do it. It’s hard to change the behavior. Because of the brain stimulation part with tDCS, we are live with patients through video visits every time. That’s really helped to have that behavioral adoption of the daily treatments, and I think that is a critical ingredient, that there is this supervised, connected onboarding of these daily therapies. There are all these wonderful tools out there, and many of them need more research, but the uptake is not there yet, and I think that connection is necessary for wider-scale adoption and people truly benefiting from these therapies.
There are 2 types of pushback; 1 is awareness. Raising awareness for your patients of this tool does not mean that they’ll use it and benefit from it. That’s a common experience for a provider. Maybe [the provider] is aware of the tool, they refer their patients who then have the tool, but they hear, “Oh, I looked at it twice, and I didn’t do it.” There’s that critical period of structured onboarding, how to use it, in order to have an adequate evaluation. I think that causes premature dismissal of some things that are actually of great therapeutic benefit. Second, despite moving the dial on the acceptability of telehealth at a lightning rate because of COVID-19, there’s always been the pushback of “people can’t do that.” [Excuses like] my patient isn’t computer or tech savvy, or my patient has too much cognitive involvement or too many motor impairments to be able to do that. However, if you take care of designing the intervention, those are all easily overcome, and that’s what we found in our journey with our program.
Well, the short answer is absolutely. But I think what you raised is the critical piece, in terms of validation. What happens is, you have a glut of apps and online programs, and some are very science based. They take what we know from in-person therapy and make it into a digital therapeutic for access. Others are very different, and it’s hard for the consumer—it’s hard for the researcher—to tell the difference sometimes between what is what. We need carefully controlled clinical trials to guide our use because nobody wants to tell anybody to use something, to put the time into something, that hasn’t been demonstrated to be worth their time. I don’t think it would replace anything that we do now. We have our provider care, our nursing support, our social worker support, our therapists—physical, occupational, all kinds of therapists that we work with. That’s already comprehensive care on-site, but this would supplement it because we know that so many people in between these visits still have significant burden of disease, primarily with these symptoms for which there aren’t any tools to readily manage them. Therefore, access to these digital therapeutics might fill that need.
It will absolutely have a positive effect in getting therapies evaluated for what we call pragmatic practical use, so very downstream. For very good reasons, clinical trials have that rigorous enrollment eligibility criteria because it’s a different set of questions. We’re on the total opposite end of the spectrum in that we want to reach as many people living with MS as possible, to have these tools evaluated. Then we can see that maybe there’s a segment or something that wouldn’t benefit from them, but let us find out by including everybody. We’re much more focused on inclusion, and in that, we’ve been able to demonstrate that it’s very important for evaluation of these types of therapies—any kind of tele- or digital therapeutics—to include the broadest spectrum of people living with MS as possible. That’s important for so many reasons. There’s a segment of people living with MS who are left out of a lot of clinical trials right now, and they face even more burden to get to a clinic visit to receive some type of therapy for a trial. We’ve been encouraged by being able to reach so many more people than are typically reached in a clinical trial to evaluate these therapies.