People with multiple sclerosis (MS) often face geographic barriers that end up limiting their treatment options. That has led a Case Western Reserve University researcher to test online- and teleconference-based methods of reducing fatigue and improving patients’ quality of life.
Matthew Plow, assistant professor at the university’s Frances Payne Bolton School of Nursing in Cleveland, Ohio, recently won a $4.9 million award from the Patient-Centered Outcomes Research Institute (PCORI) for his four-year project.
“As recent as a generation ago, people with MS might be told fatigue was ‘all in their head’ and to force themselves through this profound barrier to meaningful participation in a job, family or social life,” Plow said in a press release. “Now there are effective non-drug solutions that can lessen fatigue and empower people with MS to become more active. Unfortunately, these are not widely available.”
One in-person option available is Managing Fatigue, a course on self-management techniques that has effectively reduced fatigue when delivered in person. The Managing Fatigue course teaches participants how to experiment with strategies such as “banking energy” – the practice of saving energy to meet meaningful goals – and see how well these work for them.
But in-person formats may not be accessible for people living in rural areas or isolated regions, or for those with impaired mobility. Plow and his team will start by collecting data on how three methods of delivering this course compare in reducing fatigue and improving quality of life: online, by teleconference and in-person.
“If more accessible digital versions provide similar outcomes, clinicians could be compelled to add them to their menu of treatments for reducing MS-related fatigue,” he said.
With the assistance of a licensed occupational therapist, each of the 610 MS patients the study foresees enrolling will participate in one of the three course modes. Recruitment will focus on populations historically underserved by medical research, including people with underrepresented racial and ethnic backgrounds and those with physical and mental disabilities.
“There are gaps in our understanding of MS care options, especially among people unfortunately neglected in past research,” Plow said. “We hope our data can help personalize treatments to each patient’s needs.”
Since the U.S. Food and Drug Administration (FDA) has yet to approve the first MS-specific drug for fatigue, Plow believes this waiting period is ideal to experiment with drug-free therapeutic alternatives. In addition, there could be potential upsides to offering courses online or by teleconference, such as the possibility of creating forums where participants can share their stories and experiences in a safe, welcoming setting that wouldn’t be available without the internet.
“This research speaks to the importance of empowering patients,” said Mary E. Kerr, dean of CRWU’s School of Nursing. “Encouraging self-management is a hallmark of nursing science. I am excited by this contribution to the field.”
PCORI awarded the funding as one of five new awards aimed at helping improve available care options in MS.