Barriers to and Facilitators of Employment among Americans with Multiple Sclerosis: Results of a Qualitative Focus Group Study

By Bogenschutz, Matthew; Rumrill, Phillip D., Jr. et al. | The Journal of Rehabilitation, April-June 2016 | Go to article overview

Barriers to and Facilitators of Employment among Americans with Multiple Sclerosis: Results of a Qualitative Focus Group Study


Bogenschutz, Matthew, Rumrill, Phillip D., Jr., Seward, Hannah E., Inge, Katherine J., Hinterlong, Pamelia Cato, The Journal of Rehabilitation


Multiple sclerosis (MS) is a chronic, unpredictable neurological disease characterized by cycles of relapses and remissions, although some people experience a steadily progressive course marked by a gradual decline in general health and functioning over time (Falvo, 2014). The pattern of relapses, remissions, and progression of symptoms varies widely among and even within individuals. Fifty percent of MS diagnoses occur before the person's 30th birthday and 75% before age 40 (Kalb, 2012). More than 2.3 million people in the world are estimated to have MS, with approximately 450,000 of these individuals living in the United States (National Multiple Sclerosis Society [NMSS], 2015). In the U.S., the national incidence rate of new MS cases has increased steadily over the past 50 years (NMSS, 2015).

MS is more common among women than it is among men, with approximately three-quarters of people with MS worldwide being women (NMSS, 2015). MS is also much more common among Caucasians of European lineage than it is among other racial and ethnic groups. Relatedly, the highest prevalence rates for MS are observed in temperate regions of the globe, with much lower prevalence rates reported in warmer and tropical regions. In the U.S., two-thirds of people with MS reside in the northernmost 50% of the populace (NMSS, 2015).

MS Symptoms

People with MS may experience a wide range of physiological symptoms including fatigue, mobility problems, spasticity, numbness and tingling in the extremities, tremor, diminished strength and coordination, chronic pain, hypersensitivity to heat, visual impairments, bowel and bladder dysfunction, and sexual dysfunction, all of which contribute to the problems that adults with MS have in acquiring and maintaining employment (Antao et al., 2013). MS can also impact the person's affective responses, coping skills, and cognitive abilities. Polman, Thompson, Murray, Bowling, & Noseworthy (2006) reported that "psychiatric morbidity is increased in MS, with over 50% of patients being symptomatic at some stage" (p. 85).

The impact of MS on cognition is more significant and more prevalent than was historically believed. Current estimates of the prevalence of cognitive impairment in MS range from 43% to 70% (Chiaravalloti & DeLuca, 2008; Polman et al., 2006). Cognitive functions most affected in people with MS include speed of information processing, executive functions, memory, high-level language functions, and visual perceptual skills (Amato, Zipoli, & Portaccio, 2006; Chiaravalloti & DeLuca, 2008). Areas of cognitive functioning typically unaffected by MS include simple attention and verbal skills (DeLuca & Nocentini, 2011), recognition memory, implicit learning, and speech comprehension (Lincoln et al., 2002). The severity and type of cognitive impairment vary significantly among individuals with MS and do not appear to be strongly correlated with the degree of physical involvement (DeLuca & Nocentini, 2011).

MS and Employment

Because of the wide range of symptoms and the unpredictable nature of the disease, MS has a significant impact on employment status. Although 98% of people with MS have employment histories and 82% were still working at the time of diagnosis (Roessler, Rumrill, Li, & Leslie, 2015), the vast majority of workers with MS disengage from the workforce before retirement age. In a review of international literature on MS and employment spanning a ten-year period from 2002-2010, Schiavolin et al. (2013) found that 59% of adults with MS worldwide were unemployed. In a study of people with MS in the United States, Roessler et al. (2015) reported an identical jobless figure, although 98% of the sample were high school graduates and 46% were college graduates.

Not surprisingly, Americans with MS are concerned about their employment prospects following diagnosis. In a 2003 survey of 1,310 adults with MS from 10 states and Washington, DC, Roessler et al. …

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