Contributed by the University of Saskatchewan (see original post)
Multiple sclerosis (MS), which affects one in 3,000 Saskatchewan residents, is an unpredictable disease of the central nervous system that disrupts how information flows from the brain to the rest of the body. With World MS Day on May 30 focusing on connections – both to others and to quality care – University of Saskatchewan (USask) researchers Dr. Katherine Knox (MD) and Dr. Sarah Donkers (PhD) are working to bring physical rehabilitation for those living with MS closer to home.
Developed using patient-focused research and launched at the start of the pandemic, the successful two-year NeuroSask program brings physical activity interventions, social connection and evidence-based education to those living with neurological conditions.
Research has suggested that in cases of MS, the immune system attacks the brain and spinal cord, degenerating a fatty coating (myelin) on nerves that is responsible for sending signals in the body.
The mysteries of MS and the gaps in clinical care that may result for people living with MS have attracted the attention of physicians and rehabilitation specialists alike, such as Knox and Donkers.
“About 25 years ago, the Ministry of Health funded the first MS disease-modifying therapy for the treatment of MS and since that time, we now have 17 drugs on the Saskatchewan drug plan for those who meet exception drug status criteria,” said Knox, a practicing physiatrist and associate professor in USask’s College of Medicine.
“But these drugs are still only one part of managing the disease. Not everybody benefits from or even qualifies for treatment because the drugs are only effective in a subgroup of people living with MS,” she added.
In people living with MS, disability is progressive, but previous research has shown that physical activity helps to control MS symptoms and may help reduce the severity of flare-ups. In some animal studies, exercise has even been shown to help repair myelin damage on nerves.
“Our biggest challenge was we didn’t have enough people on the ground to help people with MS stay engaged with physical activity because if you’re dealing with a disease that makes you exhausted or impairs you physically or cognitively, it’s pretty difficult to exercise regularly,” said Knox.
“We didn’t have enough health-care professionals to help others maintain mobility important to daily life, especially in rural Saskatchewan communities.”
In 2016, Knox and co-investigator Donkers, a physiotherapist and assistant professor in USask’s School of Rehabilitation Science, decided to apply to the MS Society of Canada to find support for a web-based exercise therapy program – first piloted in the United Kingdom by Dr. Lorna Paul (PhD) of Glasgow Caledonian University – that would serve as a trial in Saskatchewan. They wanted to see if those with MS found it easier to perform regular physical activity using a virtual program rather than a typical written exercise program.
The study found that access to a physiotherapist through the research trial increased physical activity among those in the web-based program and the written exercise program. Study results were published in the International Journal of MS Care.
A surprising insight of the study was how much difference working with a health-care provider who has specific expertise in neurological conditions, could make to those living with MS who are trying exercise therapy.
“Many of our study participants reported never seeing a neuro-physiotherapist before for their MS, as they were unaware that physiotherapists can specialize,” said Donkers. “It was very eye-opening to us. It emphasized the importance of people with MS having access to physiotherapists with experience in treating neurological conditions.”
The researchers found that this secret ingredient – condition specific expertise informing movement rehabilitation programs – was key to supporting individuals in their physical rehabilitation. The research team later launched a study of Individualized Physiotherapy and Activity Coaching for Multiple Sclerosis (IPAC-MS), where a specially trained therapist worked one-on-one with clients and incorporated behaviour change techniques to co-create an individualized activity plan.
“This special ingredient of a level of expertise, we harnessed that learning into the IPAC-MS study,” said Donkers. “We are learning more not just about physical activity but about the role of physical activity and the support from an expert, and how they help build an overall concept of living well despite having MS.”
Knox and Donkers also interviewed physiotherapists and those living with MS as part of this research to determine how to build a better online platform for delivering exercise interventions. These findings were recently published in the journal Disability and Rehabilitation.
This earlier research informed the development and implementation of the NeuroSask Active and Connected program – known as NeuroSask for short.
The program combines the three key ingredients that Knox and Donkers identified from their studies as ways to support functional exercise programs: a sense of routine, some control over their health and well-being, and the opportunity to work with those that have condition-specific expertise.
The NeuroSask program is specifically tailored for those living with neurological conditions. The virtual program provides guided physical activity led by experienced neuro-physiotherapist Melanie Deneiko, expert information on health and wellness, and social connection in the form of group discussions and presentations from health experts. Originally run as a 10-week pilot program funded by the Saskatchewan Health Research Foundation at the onset of the COVID-19 pandemic when typical community services were unable to operate, NeuroSask has been running two sessions per week for the past two years.
Using an accessible platform that only requires a one-button push to join in, the program offers exercise therapy and interventions in a connection-friendly manner. Those living with MS are directed to local resources and are introduced to people with the same condition, providing a network of health and social support.
“NeuroSask brings the group social connection back in,” said Knox. “The platform allows participants to connect through the chat feature and the optional photo gallery to share and learn from each other’s lived experiences.”
Although anyone living with a neurological condition can attend, Donkers said those living with MS make up the majority of the weekly participants and can number more than 200 each session. Funding from the MS Society of Canada has allowed to the program to continue running.
Knox and Donkers plan to continue researching what makes a successful program and push for condition-specific therapists to be available via local health authorities. They are also working with a Canada-wide group, MSBEST, to establish best practice for MS rehabilitation care.
While Canadian best practice guidelines state that you should be assessed by rehabilitation specialists shortly after a stroke, there’s no such clear guideline for people living with MS, said Knox.
“Saskatchewan has one of the highest prevalence rates of MS in the world, so this is part of what we’re trying to change in our health care system and why we’re doing these systematic reviews with MSBEST, which inform what we share at NeuroSask sessions.”
While the NeuroSask program has been a huge success, the program is not a fit for everyone, and MS researchers will continue to build local programs that deliver what residents living with MS need to fill gaps in care.
“It started as a snowflake and now it’s an avalanche,” Donkers added. “When we can have a localized flavour and expertise to share in delivering the program, I think that’s part of the success.”