Boise State’s second annual Research Month is April 2018. Research Month celebrates the diverse and fascinating array of research happening each day on campus.
Boise State researchers recently teamed up with the YMCA Healthy Living Center to assess the real-world efficacy of a nationwide program designed for early stages Parkinson’s patients called Delay the Disease.
“Delay the Disease is an evidence-based program that has been evaluated previously, but we were trying to evaluate it under real-world conditions to see if it continued to show significance in functional health,” explained graduate student Sarah Fuller. In other words, can the results from controlled studies be translated to a community-based setting and will patients still see benefits from the program?
Rehabilitative programs have been developed to aid the more than 10 million people living with Parkinson’s Disease worldwide. Researchers play a vital role in assessing their efficacy – a complex process, as the exact causes of this neurodegenerative disorder are elusive. Its physical progression can vary from person to person and its cure is unknown, leaving many patients feeling helpless and frustrated once diagnosed.
“Our goal was to demonstrate the value of Delay the Disease to health care providers and payers,” added Sarah Toevs, director of the Center for the Study of Aging and the project’s principal investigator.
The Treasure Valley YMCA Healthy Living Center first launched its Delay the Disease program in 2014. Since then, more than 100 people, including Parkinson’s patients and their caregivers, have enrolled in the program, and on a monthly basis the Healthy Living Center hosts around 60 individuals. The fee-based program begins with an intake to assess each individual’s limitations and has them complete a functional assessment known as the Mini-BESTest. From there, they are free to enroll in classes, which are offered five days per week and taught by nationally certified instructors. All classes are all focused on improving patients’ functional mobility. For participants who may have financial barriers, financial assistance is available.
“We teach skills that transfer very nicely to everyday living,” explained Mary Biddle-Newberry, director of the Y Healthy Living Center. “If they’re having limitations or challenges performing a specific function, that can be frustrating and/or scary. This program provides the opportunity to learn skill sets to prevent such things like a fall or to learn how to fall well.”
In January 2016, the team recruited 14 volunteers with Parkinson’s and 12 caregivers willing to have their participation in the program tracked in regular intervals for eight months.
“Our requested requirement of participants is a minimum of twice a week,” explained Biddle-Newberry. “Research shows that Parkinson’s is one of the neurological diseases you can positively affect by being physically active on a regular basis.”
In the end, the results were encouraging.
Fuller reported that the team saw a statistically significant improvement in the functional mobility of participants with Parkinson’s disease from the start of the program to four months, four months to eight months, and baseline to eight months – in other words, the volunteers were showing improvements while enrolled in the program.
“Not only did we see improvements, but the improvements in their functional mobility reached our clinically meaningful threshold of greater than four-point change on the Mini-BESTest,” Fuller said. “A clinically meaningful change is one in which there is a noticeable effect on daily life which may impact their care clinically. This is an interesting finding for both the provider and payer markets.”
In addition, “We see an amazing fellowship and camaraderie around this program that is hard to quantify,” Biddle-Newberry added. “Encouraged to advocate for their own health, participants and caregivers receive amazing support. The fellowship that comes out of that is amazing.”
“The evidence generated from this translational study is an important step in having the program included as a component of an insurance benefit package. Delay the Disease benefits the patient, the YMCA and health care providers,” Toevs said. “However, first Boise State needed to provide the research personnel and infrastructure to do this work.”