Story by Sophie Raphael
Multiple sclerosis (MS) is a chronic, autoimmune disease involving the brain and spinal cord. While its symptoms are highly variable, it often causes difficulty with movement, vision, and speech. Although it has not been extensively studied in Hispanic/Latino populations, preliminary studies have found that Hispanics/Latinos often experience earlier onset of MS, develop more severe symptoms, and face a higher burden of disease. These factors likely arise due to limited access to healthcare, cultural and language barriers within the healthcare system, and underrepresentation in medical research. In addition to management with medication, physical exercise is often prescribed for patients with MS as a way to increase bone density, improve cognitive function, and prevent muscle weakness and tremors.
As a researcher who focuses on rehabilitation through exercise, C3EN Pilot Awardee Victoria Flores, a postdoctoral research associate at the UIC Exercise Neuroscience Research Lab, quickly noticed the profound lack of data on how this particular group responds to the exercise that they are being prescribed. “The representation is very low. They’re not in MS research related to rehabilitation trials – that we know for a fact, like less than 5%. We don’t even know if rehab in this way works. Does it actually help?” To address this gap in representation, Flores began working on her study, “Feasibility of Remote Exercise Training for Hispanics/Latinos with MS (FERLAMS).”
The goal of FERLAMS is to improve physical and mental health outcomes for Hispanic/Latinos living with multiple sclerosis in Chicago through a remotely-delivered exercise program. The exercise program includes both aerobic and resistance training, including moderate-intensity walking for 30+ minutes, three days a week and three days a week of 5-10 resistance band exercises aimed at improving strength. Participants are assigned a one-on-one behavioral coach to guide them through the exercises and provide them with support throughout the duration of the study.
Flores’ study aims to address three main questions: “First, are there a considerable number of individuals who identify as Hispanic or Latino who have been living with MS? Two, Would an at-home rehabilitation program help them with their cognitive function and physical ability? And three, are there any social and demographic factors we need to take into account?”
Because the efficacy of exercise rehabilitation in this community is relatively uncharted territory, Flores approaches the study with an exploratory mindset. “Does this intervention work? If it does or does not, what do the SDOH [social determinants of health] factors look like? And then we were hoping to see through analyses any links or patterns that we notice so we can regroup again, go back to the drawing board, and then make another iteration of this study a bit more tailored to the community.”
Victoria Flores
Flores’ question is not whether the physical therapy itself actually works. “From other populations, we know it works. That’s why there are physical therapy prescriptions for MS during a relapse. That’s why neurologists encourage physical activity and exercise.” However, the question lies in the efficacy of the delivery. “We just don’t know if Hispanics and Latinos are approaching that care in the same way.” For example, before even beginning the study, Flores identified transportation to be a major barrier to people receiving care. Even though many people qualify for transportation assistance through their insurance, they are often unaware that they have access to this resource or do not know how to go about taking advantage of it. This issue arises due to a lack of education surrounding how to navigate the healthcare system. To cut out the transportation barrier entirely, Dr. Flores decided to make the exercise program be delivered entirely remotely, either by Zoom or by phone.
Another challenge that Flores anticipated before beginning the study is the behavioral component of exercise, that is, the actions and habits that contribute to making physical activity a regular part of someone’s life. “‘Go exercise, it’s good for you!’ You can easily tell that to a person – any doctor, any therapist can, but to do it and to do it consistently is so hard,” Flores explains. “We didn’t have to have separated cultural populations to tell us that, we just know that from research.” Just as she did with the variable of transportation, Flores was able to account for it when designing her study using social cognitive theory variables that stimulate behavioral changes, including establishing routine, setting goals, and providing feedback.
One of the biggest challenges that Flores faced when designing the study was getting into contact with the people who could benefit from the study. “We don’t know where these individuals living with MS are in Chicago so to approach them to let them know that we exist and they have the option to volunteer. So it’s been a lot of innovative ways to try to reach this population – where do they hang out? Where do they go? How do we reach their family members and friends who may hear about this and share it back to them?” To help with this challenge, Flores enlisted the help of the Chicago Hispanic Health Coalition (CHHC).
Since its founding in June 1991, the CHHC has worked alongside Chicago’s Hispanic communities with an emphasis on preventative healthcare and health education. One of the ways that the CHHC interacts with the community is by going door to door in primarily Hispanic/Latino neighborhoods and providing health education and resources to members of these communities. Esther Sciammarella, a founding member and current director of the coalition, spearheads this work. “We have a system of referral for any kind of health issues so we work with the community through community health workers,” Sciammarella explains. Both researchers and the community benefit from working with researchers like Flores.
MS is a complex and unfamiliar disease to most people, so educating people on what MS is and how to identify it aligns with the CHHC’s mission. Additionally, because Flores’ study focuses on a specific community, training teams of community health workers who are familiar with these neighborhoods allows the study to reach those who are eligible for it more easily and efficiently. “So far the partnership has been creating material so that [Sciammarella’s] staff team knows what MS looks like so that if they have an individual who is expressing some challenges and they have not seen a doctor . . . at least the CHHC staff will know what they’re dealing with and be able to point them in the right direction,” Flores explains. “The idea is to connect the community with services in particular specialties–that’s the mantra of the coalition,” Sciammarella adds.
The study is still in its early stages. However, with each participant, Flores learns something new about life with MS. “Each story is different and unique–no MS is the same. Everyone has their own experiences that they are bringing to the table. I’m in a very lucky position being able to be doing this study, I get to hear their stories and experiences.” Flores hopes to use these stories and experiences to continue to tailor her exercise program to best suit the needs of the participants, ultimately creating a program that is both realistic and easy to follow as well as effective at managing the symptoms of MS.