Making MS More ‘VISIBL’

A great challenge in multiple sclerosis care is recognizing it soon enough to start intervention and change the disease trajectory. Social determinants of health, including cultural barriers, can make this especially difficult. Dr. Jaime Imitola, chief of UConn Health’s Division of Multiple Sclerosis and Translational Neuroimmunology, led a group that came up with a new, bilingual resource to help patients, medical students, and providers recognize the signs and avoid delays in care.

(Dr. Jaime Imitola, Carolyn Pennington, Chris DeFrancesco, March 2024)

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Chris: Early awareness of a medical condition often can change the trajectory of someone’s life. But what happens when you don’t even know what to look for? Today on The Pulse, we learn about a strategy to address this and give more folks a chance at starting the care they need sooner.

This is the UConn Health Pulse, a podcast to help you get to know UConn Health and its people a little better, and ideally leave you with some health information you’ll find useful.

With Carolyn Pennington, I’m Chris DeFrancesco. A term that’s becoming prominent in medicine is “social determinants of health,” often referring to socioeconomic factors that can interfere with health literacy and, therefore, care.

Carolyn: This is especially applicable to disease states that tend to disproportionately affect certain populations. One example of this is multiple sclerosis, and today we have Dr. Jaime Imitola, director of UConn Health’s Division of Multiple Sclerosis and Translational Neuroimmunology, who’s come up with a plan to try to mitigate social determinants of health when it comes to MS care. Thank you, Dr. Imitola, for joining us today.

Dr. Imitola: Thank you for having me.

Carolyn: Social determinants of health can have significant impacts on many conditions. Specifically, why is this the case with multiple sclerosis?

Dr. Imitola: Thank you. So, the first thing that we need to kind of do is define what are social determinants. These are the conditions where people live, thrive, worship, and these are important, and these are associated with lack of education. MS is a chronic condition, and it is important for patients to know exactly what’s going on with their disease. And sometimes, due to a lack of education, lack of health literacy, people are not informed about what MS is, in particular in their case. And sometimes, patients are not aware that they might have symptoms of MS, even years before the first attack. And they need to know this.

Chris: What are the biggest barriers to an early diagnosis of MS?

Dr. Imitola: The biggest barrier that we have identified in the field is actually access. But the issue of access is a very complex issue because it’s not just getting a referral to a doctor that knows MS. It’s actually what doctor and what circumstances. In addition, when people go and see doctors for early symptoms of MS, they usually are not taken seriously, and they feel that they are dismissed and they are not paying attention to those early initial symptoms of MS. So this is probably the most important thing. That’s why we focus on awareness, but awareness of the patient. So we think that as in a stroke or any other diseases, when you, educate patients to look for early signs, the patient is empowered to actually go and seek appropriate care.

Chris: So when we talk about awareness, it’s not just patient awareness, it’s awareness among the people who will be providing their care.

Dr. Imitola: So this is actually a very important question, because the MS Society has tried over the years to improve the basic knowledge for multiple sclerosis among general physicians, primary practitioners, and even general neurologists. There is a program called ECHO program that aims to do that. And it is true because — it is interesting, patients that end up having MS, may not be recognized early, and patients that may be referred to MS centers with a probable diagnosis of MS, they don’t have MS. So the issue is that probably general practitioners or general neurologists, they don’t recognize the disease and we need to do better in that area.

Carolyn: So that’s pretty concerning to me when I hear that it’s often so misdiagnosed or not diagnosed. What is it about MS that is hard to diagnose? And I know it’s probably a very complicated answer, but are the symptoms, do they mimic other diseases? What’s going on?

Dr. Imitola: That’s a great question, and I have spent about 20 years thinking about the same problem.

And I think that the issue is lack of education of our medical students and general neurologists, because in the community, there are some pervasive ideas about what a referral for MS is. Internationally, there are recognized diagnostic criteria that are focused on the initial attacks at MS. We call that collectively “clinical isolated syndromes,” and I don’t think that we have done a good job to educate the general medical community about what those are, and these are very important. So that’s why we like to make an emphasis about those initial signs of MS.

Chris: Now, you’ve come up with a way to address some of these barriers we’ve been talking about, the details published in the publication Multiple Sclerosis Journal. What are you reporting in this paper?

Dr. Imitola: Because of what I just noted, that we think that there is a lack of education of medical students and also general neurologists, we decided to create a tool that is bilingual in nature that collects, in a very clear, succinct manner, both graphic and words, what are the most relevant clinical isolated syndromes in MS. And so what we did is, together with medical students at UConn Health, the UConn Health School of Medicine, we put together, we worked for about a year looking at what are those symptoms and signs. And we put it together in a framework that helps anyone to detect or actually be educated about what are the initial red flags for multiple sclerosis. And we hope to validate this in medical students’ education, but also that can be helpful for patients and families.

Carolyn: And you’ve come up with a mnemonic device to help make it easier to recognize the signs of MS?

Dr. Imitola: Yeah, so, and this is called VISIBLE-MS. It’s interesting because it’s an acronym that can be used in both English and Spanish.

In English it’s “visible,” or “visibly,” and in Spanish it’s “visible,” or “visible.” And basically, it has four components, and one is, “VICI” is “vision,” and then the “B” is actually “back” or “belly” numbness. The leg (L) is “locomotion” or “leg” numbness and weakness, and “Y” is, in English, Y is the age. Generally speaking, when you have acute neurological symptoms, in young people, especially, visual loss that is painful, that’s actually very concerning for demarinating diseases that includes multiple sclerosis as at the top, number one.

Chris: And describe a little bit more how this will help people recognize the early signs of MS, particularly on the early side, as we are trying to do here.

Dr. Imitola: We have learned over the years that there is some confusion about what a sign or a symptom of MS is. And we have learned that many important signs are missed when patients seek help in the beginning, and that’s why we’ve put together the mnemonic, right? So it’s, it’s vision, balance, locomotion, weakness and numbness, and the age that is important.

At the end of the day, this is not a diagnostic tool. It’s an awareness tool. And it’s very relatable because it’s both in English and Spanish. And in addition, when you empower the medical student or you empower a family member, these people can actually seek care and then go to the nearest ED to say, “Hey, I have these symptoms.”

It’s like similar strategies have used in stroke. The famous one is called BEFAST or FAST, and right now it’s in the popular domain. Everybody knows what FAST means. And when they see the symptoms, they can immediately go and seek help. I think that, in generally speaking, based on our research for over the years, patients with MS, especially minorities, they, when they seek help, they are not taken seriously and they are downplayed and then time passes, and when the time passes in a demyelinating attack, it’s important.

Carolyn: OK, so why is early intervention so important? Really what difference does it make for the long-term prognosis of an MS patient to be diagnosed at the start?

Dr. Imitola: This is great, great question. And we have learned over the years, a couple of things.

First, that MS is a continuous process. It’s not kind of stabilized, regardless of what the classification of MS you have, number one.

Number two is that patients that are not diagnosed, the disease can get worse, especially in the beginning. So, the early attacks, the early activity is very important for what is going to happen later in the years of disease process. So, there are many studies that suggest that whatever happens in the first 15 months of the disease is very impactful 15 years later. So we need to treat patients early, in the beginning of the disease.

One notable added benefit is that we recognize that minorities, for whatever reason that we don’t understand right now, they have worse disease. Maybe because they don’t have access, but there are biological differences in African Americans and Hispanics with multiple sclerosis that are crucial. And that’s why us and UConn Health, since we are the flagship institution of the state, we must investigate, we must do things for that community.

Chris: Dr. Imitola, let’s talk a little bit, UConn Health being an academic medical center and this concept, this VISIBLY concept that we’re talking about, has roots here at UConn Health. Talk a little bit about the process. Who was involved in bringing this to the prominence that we’re hoping for?

Dr. Imitola: Yes, thank you. So, for the last two years, we have been working collectively to help our patients. As you know well, UConn Health has an important role in patients that are minorities and Hispanics. We have a lot of patients that seek our care because of that. And those patients, sometimes they don’t have any other place to go because, of issues of insurance. So we need to see the patients.

So as a result of that, I, together with my team, decided to focus on that area because it’s an important area. We have interest in solving progression on the molecular level. But in the meantime, we think that we have to do something about the prevention strategy. So prevention in MS is becoming a important goal of care. And prevention is not only something that the physicians do, but also the patients. So the patient needs to be empowered, and needs to be educated.

So this is an effort of medical students, undergrads, senior medical students under my leadership, that we’ve come across over the last 10 months. We had multiple meetings in what will be relevant for them as a medical students, undergrads, to recognize as early signs of MS. We did the research, literature research, and then the paper was submitted to a top MS journal and reviewed by three independent international reviewers, and is accepted and published.

Carolyn: So what are the next steps for you? The paper has been published. How do you continue to raise awareness in the community other than this wonderful podcast?

Dr. Imitola: Well, thank you. So this is a long project. So we want to both increase awareness, we want to validate this at the medical student level in several medical schools. In addition, we are hoping to validate this at the patient level. These are rigorous processes, but I will tell you that empirically I am using the tool in my clinic and people recognize themselves, as early signs or early symptoms of MS. So the idea at the end of the day is that we need to make an effort to raise awareness in our populations that are minorities and African Americans and Hispanics and others because early awareness leads to early treatment, and leads to prevention and changing the trajectory of the disease process.

We know that, because we have seen it, that many patients come to us late in the disease process. So we don’t want this to happen.

Chris: And what can we collectively do to try to advance this, Dr. Imitola?

Dr. Imitola: Oh, great. Thank you. MS is a very costly disease. The estimation of the MS Society is that MS accounts for about $900 billion per year, and the future is going to be an increase in cost. And that’s actually not a social cost. If you ask a patient, it’s worse.

So, we think that collectively, medical students, medical doctors, nurses, patients, advocates need to increase their awareness. Because we think that that’s the critical point. So, if patients are aware, they are empowered to seek care. And when that happens, we can actually treat patients early.

At the end of the day, MS changes your life. We want the patients to be onboarded; we have this concept that we use in our MS center that patients need to be onboarded to the disease, empowered to seek care and seek care in the very early stages.

Chris: Dr. Jaime Imitola is director of UConn Health’s Division of Multiple Sclerosis and Translational Neuroimmunology. The paper is titled “VISIBL-MS: A Bilingual Educational Framework to Increase Awareness of Early Multiple Sclerosis.” You’ll find it in the publication Multiple Sclerosis Journal. Thank you for joining us, and congratulations on the paper.

Dr. Imitola: Thank you.

Chris: And we will include the information in the show notes for a Spanish-speaking version of this interview, as well as more information on your paper, Dr. Imitola, and of course, MS services at UConn Health.

That is our time for today. For Dr. Jaime Imitola and Carolyn Pennington, I’m Chris DeFrancesco. Thank you for listening to the UConn Health Pulse. Be sure to subscribe, so you can catch us next time. And please, share with a friend.