The vision for a multiple sclerosis center of excellence in central Illinois is coming into focus.
Can meditation improve body function? Which is better: walking a treadmill or aquatic exercise? Both questions may soon be the subject of separate medical studies involving multiple sclerosis. They were among the results of a unique event held last fall in East Peoria, in which more than 70 people living with multiple sclerosis and their caregivers were asked what kind of research they would like to see involving this potentially disabling disease of the brain and spinal cord.
“Patients provide a unique and valuable perspective to researchers that sometimes may be overlooked,” says Dr. Carl Asche, director of the Center for Outcomes Research at the University of Illinois College of Medicine at Peoria. “Fatigue, for example, is a major issue for people living with multiple sclerosis, and many people with MS are asking about non-pharmacological therapies—how they can improve their daily lives without the use of drugs.”
A Working Coalition
Dr. Asche and the College of Medicine have formed a coalition with the Central Illinois MS Council and the Illinois Neurological Institute’s Multiple Sclerosis Center to develop a patient-led research community. Each provides a unique perspective of the disease, from those who experience it firsthand to those who are on the healthcare frontlines and those adept at assembling research studies.
“This is something that’s never been done before with MS,” notes Dr. Bonnie Paris, who, with Dr. Asche, sought and received funding for the initiative, sponsored by the Patient Centered Outcomes Research Institute (PCORI) and the Central Illinois MS Council. Several research studies are already underway, and others are being planned that will put Peoria on the map for MS research.
Among those already underway is a new MS “flow sheet registry” to address communication gaps in current electronic medical records. New data collection fields, for example, would improve patient care by providing a better “snapshot” when assessing someone’s MS history and how the disease may be progressing.
“There is no cure for MS, so managing disease symptoms is vital to the quality of life,” explains Kimberly Cooley, research coordinator for the Illinois Neurological Institute’s Multiple Sclerosis Center, who is spearheading the flow sheet registry implementation. “With this tool, our care providers will be able to see over the course of several years a person’s motor assessments, medication use, relapses, side effects, Vitamin D levels, MRI results… and can be kind of a visual way—and a more efficient way—to see how patients are doing and treat them. We believe this will help us slow the progression of MS and reduce relapse rates.”
In addition, the MS Center is moving to a new location at 200 Pennsylvania Avenue, next to OSF Saint Francis Medical Center, so patients can experience a “one-stop shop” visit with access to valet, labs, EKG and eye testing the same day as their appointment. From Day One, patients will be connected with their provider, Dr. Dennis Garwacki, and physician assistant Yongzhong Wei, as well as physical and occupational therapists, dieticians, urology clinicians, specialized counselors and more, depending on their specific needs.
“This is being designed as a very personalized experience,” Cooley says. “The goal is to not only treat the disease with medications, but offer symptom management so patients are living the best life they can.”
Initiatives Under Consideration
Two other research initiatives being considered will focus on managing symptoms without the use of drugs. One of the proposed studies involves “mindfulness,” a type of meditation and self-awareness, which has shown some success alleviating MS symptoms. The study would recruit 90 MS patients to undergo an eight-week mindfulness course to learn how to apply the calming, thought-focused methods in their day-to-day lives. The results will be compared to a separate control group.
The local MS research group also hopes to compare the effectiveness of treadmill and aquatic exercise. Both activities have proven beneficial in managing MS symptoms, but no one has ever compared the two. “We’re looking at some things that no one else is doing,” Asche notes.
Follow-up meetings with an advisory group from the patient-led research community are planned for March and May to provide regular progress updates on the research taking place.
“Some asked about the effectiveness of new drugs on MS, and others about the cause of MS,” Asche continues. “While those are important questions, we will leave much of the new drug research to pharmaceutical companies. We wanted to focus on research that we can do that will have an immediate difference in the lives of those with MS.”
Building on a Vision
Larry Wallden, a retired Caterpillar executive and volunteer with the Central Illinois MS Council, has endured the effects of MS for more than 30 years. He has long held a vision of Peoria as a go-to “center of excellence” when it comes to multiple sclerosis.
“We’ve taking some very positive steps in the last several months to bring the research side up with the great clinical care that is already offered,” Wallden declares. “We’re moving in a direction to get this MS center to be one of the best in the country. And from the MS Council perspective, this is all driven [by] our mission: to improve the quality of life of the MS community in central Illinois… the way we care for patients and their families, to diagnoses, treatment, education and the research.”
Wallden says the partnerships formed among the MS community, the hospital and the university are leading the way, and he hopes they will lead to additional basic science research involving MS and immunology. “That’s the beauty of what we’re creating here in central Illinois—a community collaboration of patients, clinicians and researchers whose goals are aligned toward finding better outcomes for those with multiple sclerosis.” iBi