New Research at Shepherd Center Seeks to Help People with Multiple Sclerosis Stay Active in the Workforce

For many of us, working is a major part of our identity and sense of purpose. But for the estimated 400,000 Americans with multiple sclerosis (MS), staying in the workforce can be challenging. Yet, research consistently shows the benefits of being gainfully employed. Having a job offers financial security and self-fulfillment, and it is linked to better health and longevity.

To help people with MS maintain or regain employment more readily, Shepherd Center, with its extensive experience treating people with MS, has been selected to help conduct a pioneering new study to identify the factors that either support or hinder someone’s ability to work after diagnosis. The ultimate goal is to use this information to design useful interventions and programs, tailor vocational counseling, and educate policymakers and employers to help people with MS stay employed for as long as possible.

“It is one of the most comprehensive studies of MS and employment to date,” says James Krause, Ph.D., principal investigator for this study and long time Shepherd Center research collaborator who is a professor and associate dean for research at the College of Health Professions at the Medical University of South Carolina (MUSC). “We are not just focusing on whether someone is employed. Rather, we’re investigating all aspects of employment – things like earnings, promotions, job satisfaction – and we’re trying to see what circumstances lead to the best employment outcomes throughout the lifetime, not just a single point in time.”

Researchers are administering surveys to the more than 1,050 people treated for MS at Shepherd Center. What’s unique, Dr. Krause says, is that this study sample represents people with all types of MS, no matter what their present employment status is or where they are in the progression of their disease. Researchers will examine detailed demographic and employment information, as well as symptoms, how they may play a role, if patients disclose they have MS, acceptance in the workplace, if accommodations have been made (for fatigue, physical adjustments, etc.) and other factors. The survey was developed based on feedback from 74 patients with MS who took part in focus groups conducted at Shepherd Center, MUSC, and in four Ohio cities and towns (Cleveland, Kent, Akron, and Youngstown) through the MS Society in 2015.

This study is part of a larger effort called Successful Employment and Quality Work Life after Severe Disability. It is an extension of Dr. Krause’s ongoing research in spinal cord injury (SCI), which Deborah Backus, PT, Ph.D., director of MS research at Shepherd Center, says has already led to meaningful changes for patients – something she hopes can be replicated for the MS community, too. The research is being funded by the National Institute for Disability, Independent Living, and Rehabilitation Research; the MS project is part of a larger grant to Virginia Commonwealth University.

Unlike SCI in which the physical disability can be obvious, MS symptoms can be unpredictable and invisible, especially when someone is in remission or does not have physical disability.

“It makes it difficult for people to understand what people with MS are up against,” Dr. Backus says.

Also, people with MS struggle over whether to tell their employer about their diagnosis. On one hand, they worry they will be demoted or lose their job entirely if they choose to disclose their diagnosis. On the other hand, if they do not disclose their condition, they run the risk of not getting the accommodations they need to successfully perform their job and, as Dr. Krause explains, their symptoms may be misconstrued as lack of interest or motivation.

“It can be a vicious cycle. For example, a person may lose some mobility, limiting their access to the areas in which they work; or they experience fatigue, but they don’t have planned rest periods at work that may allow them to be more productive. Then they can’t perform their job and may lose it,” Dr. Backus says.

The decision about whether to continue working or to go back to work is often made too soon, experts say. The issue is that once someone goes on disability, they rarely can get back into the workforce, Dr. Krause notes.

“With any disability, employment can be pushed aside in the short-term,” Dr. Krause says. “But over the long term, employment is fundamental to adult life, and if you can’t engage in it, there’s going to be a void. We want to give people every chance possible to maintain that employment for as long as possible.”

Researchers are optimistic that the results of this study will help people with MS continue to thrive in the workplace by pinpointing the drivers of success. Results will be reported in 2017 and will include a comparison with SCI.

“It’s an exciting collaboration, and it ties into everything we are doing at Shepherd Center to care for the whole person,” Dr. Backus says.

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By Amanda Crowe, MPH