Helping people with Multiple Sclerosis effectively manage fatigue

For people with Multiple Sclerosis, one of the most common and debilitating symptoms is fatigue. Not only does it have a significant impact on quality of life, it can also be a profound barrier to participation in meaningful activities.

A group of researchers from Dalhousie University, Case Western Reserve University, and Queens University recently received almost $4.9 million US from the Patient-Centered Outcomes Research Unit (PCORI) to compare effectiveness of face to face, online and teleconference based adaptations of a non-pharmacological program to reduce fatigue and improve quality of life.

PCORI is an independent, non-profit organization authorized by the United States Congress in 2010. Its mission is to fund research that will provide patients, their caregivers and clinicians with the evidence-based information needed to make better-informed healthcare decisions. This funding was part of five new awards aimed at helping MS patients choose among available care options.

“This study was selected for PCORI funding for its potential to fill an important gap in our understanding of MS treatment,” says Joe Selby, PCORI Executive Director, in a news release. “It will provide useful information to help patients and their caregivers weigh the effectiveness of their care options. We look forward to following the study’s progress and working with this talented team of researchers to share the results.”

Reducing the impact of fatigue

Dalhousie’s Tanya Packer, a professor with the Faculty of Health, wrote the original program protocol, and will be the lead investigator for the online portion of this study.

“This is a very large project that will test the effectiveness of three different ways to deliver an occupational therapy fatigue self-management intervention for people with MS,” says Dr. Packer. “The study will be based on prior research, but will test, for the first time, whether all formats are equally effective when tested in the context of every day clinical practice.”

Roughly 2.3 million people worldwide have MS, a progressive disease damaging nerves and disrupting the communication to the muscles. To date, no drugs for MS fatigue have been approved by the U.S. Food and Drug Administration, and medications prescribed for the condition show only a modest effect.

The researchers will specifically focus on testing the effectiveness of a course that teaches self-management techniques, called Managing Fatigue. Participants in this course learn about taking rest breaks, re-evaluating priorities, communicating needs, re-organizing space, and experimenting with strategies for “banking” energy and “spending” limited energy to meet personal and meaningful goals.

Although the Managing Fatigue course has been incredibly effective when delivered in person, it is not always accessible to those who do not have access to transportation, or live in remote areas.        

The three different modes of delivering the Managing Fatigue course will be compared at multiple sites around the United States. A total of 610 people with MS will be enrolled in the study. The ultimate goal is to provide data that can help personalize treatments to each patient’s needs.

“If all methods of delivering the course are equally effective, it will mean that people in rural areas who may have mobility problems, or no access to transportation, will be able to participate in the program” says Dr. Packer. “It will also be the evidence needed for health services and insurance companies to invest in new technologies that increase access to one of the only interventions effective in reducing MS fatigue.”

Improving patients' lives

The award has been approved pending the completion of a business and programmatic review by PCORI staff and issue of a formal contract.

“This program was born out of my work with clients who were being told their fatigue was not real or that it was ‘in their heads,’” says Dr. Packer. “Their distress and frustration were the catalyst. Now, with over twenty years of work by researchers and practitioners internationally, this award goes beyond effectiveness to access and personalized care.”

For more information about this project, visit the PCORI website.

October is national occupational therapy month in Canada. For more information on activities happening, please visit the Canadian Association of Occupational Therapists’ website.