People Living with MS Eager to Take Part in Research for Increased Physical Activity

By Special Contributor Nikki Desjardins of SHRF

When a research project sees high recruitment rates, it speaks to the engagement and relevance of the research topic. That is the experience one research team has had recently, led by Drs. Sarah Donkers and Katherine Knox from the College of Medicine at the University of Saskatchewan and funded by Saskatchewan Health Research Foundation (SHRF) and the Saskatchewan Centre for Patient-Oriented Research (SCPOR).

So, what is the research topic that has people so eager to take part? The project will investigate how to help people with multiple sclerosis (MS) overcome their unique barriers to being physically active with an aim to increase physical activity participation to a level that would provide health benefits. It will test a novel approach combining individualized behaviour change strategies with continued access to coaching from physiotherapists. Let’s break that down, and you’ll see the value of this research to the people of Saskatchewan.

MS in Saskatchewan

Previous SHRF-funded research conducted by team members Drs. Charity Evans and Katherine Knox reported a Saskatchewan MS prevalence rate of 315 per 100,000 people – among the highest rates in the world. MS is a chronic degenerative neurological disease involving an autoimmune attack on the central nervous system. People experience a variety of neurological symptoms and a variable loss of function. Physical activity in MS is associated with improved fitness, symptoms and function, fewer relapses, and fewer brain lesions on MRI. However, it is estimated that approximately 80% of persons living with MS are not sufficiently active for health benefits.

Many people living with MS recognize the importance of physical activity, but often indicate a lack of support, including limited access to professionals knowledgeable about both MS and physical activity. There is a need to identify effective interventions for improving activity levels safely and appropriately. That is where this research team comes in.

Identifying Effective Ways to Increase Physical Activity

Behaviour change strategies target specific behaviours involved in increasing and maintaining physical activity. The primary purpose of this project is to determine if personalised behaviour change strategies, combined with individualized methods of being active, and access to physiotherapists with expertise in neurological diseases (neurophysiotherapists) increases physical activity.

To do this, 14 experienced physiotherapists from across the province have been provided with training in behaviour change theory and techniques, and specific knowledge about MS. This training aimed to provide physiotherapists with an enhanced set of tools for individualized MS care. An additional benefit from this research has been the building of an interprofessional support network for a community of practice across the province.

“The process of doing this research has become an intervention in itself,” says Donkers. “The physiotherapists are creating an incredible network across the province of health care providers who can share resources, knowledge, and support each other to optimize care for those living with neurological conditions outside of this study.”

Participants who may benefit from increasing their activity levels and who are still able to walk will be randomized into two groups. The first group will receive 12 months of the personalized approach, which includes behaviour change strategies, physical activity recommendations, and ongoing physiotherapist support. The wait-list control group will receive usual care for 12 months and then be offered the personalized intervention for a 6-month period.

The research team, which includes patient and family advisors who are either patients or caregivers of those living with MS, will collect and assess data on the progress of those in the study throughout the 12 months. Physical activity levels, MS symptom impact, and confidence for staying active with MS will be evaluated by short survey questionnaires.

“We are embarking on a project that will listen to the individual needs of those living with MS and respond to them in a meaningful and relevant way,” says Patient and Family Advisor team member Eugene Paquin.

Research That Matters to Saskatchewan

The interest to participate in this study and the commitment of those on this collaborative team demonstrates that this research matters to the people of Saskatchewan. Participant recruitment began with random invites to people living with MS who previously consented to be contacted about future research studies. Within two and half months, the study was fully recruited with 120 participants.

“We are now at capacity, and it will be hard to turn people away,” comments Knox. She is hopeful the research will lead to new models of personalized care which support people with chronic conditions to be active for life.

“This project, focusing on innovative ways to increase physical activity levels, is a priority identified by our members of the MS Society,” says President of the MS Society of Canada – Manitoba and Saskatchewan Division and research team member, Erin Kuan. “Results from this research will potentially give those living with MS another tool for achieving and maintaining better health and wellness.”

Katherine Knox and Sarah Donkers. Photo Courtesy SHRF