Multiple sclerosis: A high-incidence immune-mediated disease of the central nervous system

1. Introduction

With its onset in early to middle adulthood, multiple sclerosis (MS) usually affects people with established employment histories who were working at the time of diagnosis (Rumrill, 2016). However, the progression of the disease is accompanied by what can only be referred to as a mass exodus from the labor force; the majority of Americans with MS are unemployed five years after diagnosis (Uccelli, Specchia, Battaglia, & Miller, 2009). Encouraging advances in self-management and medical treatment have enabled many people with MS to live healthier, fuller, and more active lives than was possible 20 or 30 years ago, but improvements in functional capabilities have not translated directly into improved employment outcomes (Tansey et al., 2015).

Vocational rehabilitation researchers have identified the episodic and unpredictable nature of the disease, the wide range of physiological and neurological symptoms, and a lack of understanding of the disease on the part of employers as partial explanations for the significant attrition from the work force that coincides with diagnoses of MS (Chiu et al., 2013; Koch & Rumrill, 2017). The purpose of this article is to overview the medical, psychosocial, and vocational aspects of MS, and to present the growing population of Americans with MS as an emerging vocational rehabilitation clientele.

2. Medical and psychosocial aspects of MS

MS is well known to medical science as a chronic, immune-mediated disease of the central nervous system (CNS; National Multiple Sclerosis Society [NMSS], 2018a). The disease is characterized by episodic and recurrent periods of inflammation that result in the destruction of CNS myelin and subsequent damage to the underlying CNS axons (Lanssmann, 2011; Lee & Dunn, 2013). The lipid-based myelin sheath surrounds the CNS axons and facilitates efficient conduction of electrical impulses from the brain to the rest of the body via the spinal cord (Murray, 2016). When damage to the myelin occurs, electrical impulses are not conveyed effectively, impeding the conduction of information and disrupting virtually every physical, sensory, mental, and emotional process (Schapiro, 2003). Additional neurological problems occur when patches of myelin deteriorate and are replaced by hardened scar tissue, further interrupting the conduction of nerve impulses (DeLuca & Nocentini, 2011). Although MS was once thought to affect only white matter tracts in the CNS, recent advances in magnetic resonance imaging (MRI) technology have shown that concurrent damage to CNS gray matter is common, especially in progressive forms of the disease (Hulst & Geurts, 2011; Multiple Sclerosis Coalition, 2015).

Murray (2016) reported that MS is the most common non-traumatic neurological disease of young adults in the world. It affects as many as 2.3 million people across the globe (NMSS, 2018a). The prevalence of MS in the US is estimated at 450,000 (Multiple Sclerosis Coalition, 2015). Some 10,000 new cases of MS are diagnosed each year in the US (Kalb, 2016). Initial symptoms are most often evident during early adulthood, typically between the ages of 20 and 50 (Kalb, 2016; Schapiro, 2003). MS is about three times more common in women than men, and there is evidence that this female:male ratio may be increasing (Dunn & Steinman, 2013; NMSS, 2018a).

MS is evident in most ethnic groups, including African-Americans, Asians, and Hispanics/Latinos (Multiple Sclerosis Coalition, 2015), but it has historically been thought to occur most frequently among Caucasians in Western Europe and North America (DeLuca & Nocentini, 2011). That said, recent US research suggests that the risk of developing MS may be higher in African American women than in Caucasian American men or women (Langer-Gould, Brara, Beaber, & Zhang, 2013).

MS is described as having a multifactorial etiology, including both genetic and environmental factors (Mandia et al., 2014). Genetic factors appear to have a significant role in the development of MS (NMSS, 2018b), but research suggests that environmental factors may trigger the autoimmune response in genetically susceptible individuals (Bishop, Rumrill, & Timblin, 2016; Mandia et al., 2014). Suspected environmental triggers for the initial symptoms of MS include viruses and bacteria such as measles, human herpes virus-6, and Epstein-Barr virus. There is also growing evidence that ultraviolet light exposure, vitamin D levels, and cigarette smoking may be associated with the risk of developing MS (NMSS, 2018b; Wingerchuk, 2011). Geography has also been linked to the risk of developing MS, with higher MS prevalence rates being reported in temperate regions of the globe and in the northern half of the United States (NMSS, 2018b).

3. Courses of MS

The clinical classification of the courses or types of MS was recently updated by the International Advisory Committee on Clinical Trials in MS (Lublin et al., 2014). The Committee retained most elements of the previous classification system, but several important changes were implemented (see Lublin et al., 2014 for a detailed description). These changes included the addition of the Clinically Isolated Syndrome (CIS) and the elimination of the Progressive Relapsing course of MS.

CIS was identified as “the first clinical presentation of a disease that shows characteristics of inflammatory demyelination that could be MS, but has yet to fulfill criteria” (Lublin et al, 2014, p. 279). Thus, CIS refers to an initial episode of neurologic symptoms that lasts at least 24 hours and is caused by CNS inflammation or demyelination (NMSS, 2018c). The CIS episode is typically followed by a complete or partial recovery. Individuals who experience CIS may or may not develop MS in the future (NMSS, 2018c).

Relapsing-Remitting MS (RRMS) is the initial diagnosis for approximately 85% of people with MS (Murray, 2016). This course is characterized by clearly defined flare-ups (also called relapses, exacerbations, or attacks) that may last from days to weeks, with or without asymptomatic periods, and that are followed by partial or complete recovery periods, or remissions, during which no disease progression occurs. RRMS may be further characterized as either active (i.e., with relapses and/or evidence of new MRI activity) or not active, as well as worsening (i.e., confirmed increase in disability over a specified period of time following a relapse) or not worsening (Lublin et al., 2014; NMSS, 2018d).

The majority of people who are initially diagnosed with RRMS eventually transition to a secondary progressive course (SPMS). This course is characterized by a steady progressive course typified by worsening of neurological functioning and accumulation of disability over time (NMSS, 2018d).

Primary-progressive MS (PPMS) is diagnosed in approximately 15% of people with MS and is characterized by a slow decline in neurologic function from onset, with a variable rate of progression and no distinct relapses or remissions but occasional periods of stability and temporary minor improvements (Lublin et al., 2014). PPMS may also be further classified as either active or not active at any given time.

4. Symptoms

Regardless of the course of the disease, the physiological symptoms of MS extend over a wide range, including fatigue (which is reported by approximately 90% of people with MS; Murray, 2016), 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. The type and severity of MS symptoms are determined chiefly by the location and size of the lesions that occur in the CNS (Murray, 2016). No two people with MS experience the same pattern of symptoms, and, even within the individual with MS, physiological and other effects may become evident and disappear without warning, appear in various combinations, or intensify in a seemingly random pattern (Kalb, 2016).

In addition to its physiological and sensory effects, MS can impact cognitive functioning, emotional energy, and mood states. Current estimates of the prevalence of cognitive impairment range from 43% to 70% (Kalb, 2016). Along with fatigue, cognitive impairment is a leading reason for loss of employment (Nissen & Rumrill, 2016). Cognitive impairment is most frequently observed in information processing speed and efficiency, episodic memory or long-term memory retrieval, complex attention, executive functioning, and visual perceptual skills (Bishop et al., 2016; Kalb, 2016; Nissen & Rumrill, 2016). Overall intelligence, simple attention, and verbal skills are usually not affected by MS (Fraser et al., 2002).

Bishop et al. (2016) reported that the severity and type of cognitive impairment vary widely among individuals with MS, and that they are not strongly correlated with the degree of physical disability. Approximately 20 to 30 percent of people with MS have experienced cognitive changes before they have their first exacerbation, and some research suggests that cognitive deficits may precede the onset of MS by more than a year (Kalb, 2016). Those who present with cognitive impairments early in the course of the disease appear to be at greater risk for decline over time (DeLuca & Nocentini, 2011).

Depression and anxiety are the most frequently reported mental health problems among adults with MS (Kalb, 2016). According to the Multiple Sclerosis Coalition (2015), between 36% and 54% of people with MS will experience a major depressive disorder, with the annual prevalence rate of depression being around 20%. The lifetime risk for anxiety disorders, such as panic disorder, generalized anxiety disorder, and obsessive-compulsive disorder, is approximately three times greater in people with MS than in the general population (DeLuca & Nocentini, 2011; Minden et al., 2014).

5. Treatment

There is currently no cure for MS, but considerable progress is being made in understanding its causes and disease processes. The development of new treatments has also rapidly increased in recent years. Current treatments are aimed at modifying the disease course, managing relapses, and alleviating ongoing symptoms. As of this writing, disease-modifying therapies (DMTs) form the basis of treatment for most types of the disease. Treatment with DMTs is aimed at suppressing CNS inflammation and reducing exacerbation rates (Bishop et al., 2016; Multiple Sclerosis Coalition, 2015). These medications have been shown in clinical trials to reduce the number and severity of attacks, reduce disease activity, and delay the onset of disability (Murray, 2016). There are currently fifteen U.S. Food and Drug Administration (FDA)-approved MS disease-modifying therapies, including eight injectable medications, three oral medications, and four infused medications (NMSS, 2018e).

6. MS, health, and function

MS can have a deleterious impact on health and function in virtually every aspect of life. At least 55% of Americans with MS require some form of assistance with walking, more than 50% require the help of another person to perform personal care activities, and over 60% require assistance with routine or instrumental activities (Bishop, Sheppard-Jones, et al., 2013; Davis & Tyry, 2008; Minden et al., 2006). Between 30% and 50% of people with MS require some form of home care assistance and approximately 25% will require long-term care during the course of their illness (Minden et al., 2006). In a recent national survey of over 5,000 Americans with MS almost one-in-five (17.4%) indicated that they are limited in their homes because their residence does not meet their accessibility needs (Bishop, Sheppard-Jones et al., 2013).

The symptoms of MS frequently lead to physical inactivity and a sedentary lifestyle, and people with MS have consistently been found to be less physically active than persons without MS (e.g., Motl et al, 2005; Plow et al. 2012). As a consequence, there is an increased focus on wellness and health promotion both among people with MS and among health professionals (Dunn, Bhargava, & Kalb, 2015), but concerns remain over the degree of physical inactivity in this population.

Sandroff et al. (2012) noted that the degree of physical inactivity can be overcome through the delivery of behavioral health promotion interventions. However, people with MS have been found to experience a wide range of personal, social, and environmental barriers to physical activity and health promotion (e.g., Hebert, Corboy, Manago, & Schenkman, 2011; Morrison & Stuifbergen, 2014; Rietberg, Brooks, Uitdehaag, & Kwakkel, 2004). Based on a review of research published between 2000 and 2012, Dixon-Ibarra et al. (2014) described the current state of health behavior research for individuals with MS as being in its early stages of development, suggesting that additional research is necessary to (a) evaluate behavior-change interventions and (b) translate existing research into practice.

One health-related issue that has received relatively little research attention until recently concerns the barriers to accessible health care among people with MS. Existing research suggests that people with MS have maintained a general dissatisfaction with their MS care (Forbes, While, & Taylor, 2007) and, specifically, with (a) the limited availability, accessibility, and quality of care; (b) the limited availability and accessibility of specialized services; (c) the lack or poor quality of information from providers; (d) ineffective provider communication skills; and (e) poor health care coordination (Chiu, Bishop, Santens, Strauser, & Pionke, 2017; Forbes et al., 2007; Heesen et al., 2007; Iezzoni, Davis, Soukup, & O’Day, 2002; Kroll & Neri, 2003).

The relationship between health and employment has also begun to receive research attention. Employment provides a means by which individuals survive, derive power, connect socially with others, and attain self-determination and well-being (Blustein, 2006; 2008; Schultz & Gatchel, 2016). In contrast, being disconnected from the labor market, or not engaging in productive activity, is often associated with negative physical and psychological health-related outcomes (Rubin, Roessler, & Rumrill, 2016; Strauser, 2013). High unemployment and underemployment rates disproportionately impact individuals with disabilities and chronic health conditions (Andrew & Andrew, 2012). These contribute to increased social isolation, higher risk for decreased levels of physical and psychological health, and decreased engagement with the broader society (Johnson, 2016; Strauser, 2013).

Although functional status has been found to be highly correlated with employment status, the relationship between function and employment among people with MS is far more complex than a simple linear relationship. As a consequence of the complexity of the factors involved in the decisions that people with MS make about employment, effective approaches to vocational rehabilitation remain elusive (Julian, Vella, Vollmer, Hadjimichael, & Mohr, 2008; Kahn, Ng, & Turner-Stokes, 2011; Rumrill, 2016). Despite the significant body of research exploring the employment situation for people with MS, relatively little research attention has been focused on the relationship between health, healthcare participation, and employment. Neither have researchers fully explored the prospective impact of health on employment, that is, whether and how does the person’s current health status affect his or her future plans for employment. Cross-sectional research on the relationship between health status and employment, however, supports the premise that health and employment are closely linked. Van der Hiele et al. (2014) explored work participation among newly diagnosed people with MS in the Netherlands. Participants in the study with paid jobs reported better physical functioning, better memory functioning, and a lower physical impact of fatigue than did participants without paid jobs. Physical functioning was the main predictor of employment status. The authors concluded that better physical functioning was the primary factor involved with increased work participation in early MS. Similarly, Krokavcova et al. (2012) explored how employment is associated with perceived physical and mental health status in people with MS, also in a European sample, and found that employment was significantly related to good physical health, and to better mental health among younger workers. Employment has also been associated with higher levels of quality of life among adults with MS (Dorstyn, Roberts, Murphy, & Haub, 2017; Pack, Szirony, Kushner, & Bellaw, 2013).

7. MS and employment

As noted earlier in this article, the onset of MS typically occurs between the ages of 20 and 50, with the peak incidence of initial symptoms occurring at around age 30. From a career development standpoint, the years between ages 20 and 50 are the three most active decades of most people’s lives (Zunker, 2015). In the life-span, life space theory of careers based on Donald Super’s work (Hartung, 2013), this period of early to mid-adulthood is typically marked by (a) developing into an experienced and competent employee, (b) establishing oneself in the position, and c) advancing in one’s career and attaining further career goals. For many people with MS, however, the career development process slows and, in many cases, ceases after the illness manifests itself.

More than 95 percent of Americans with MS have employment histories; that is, they have worked at some time in the past (DeLuca & Nocentini, 2011; Li et al., 2018). Some 82 percent of people with MS were still working at the time of their diagnosis according to survey findings reported by Roessler et al. (2015). As the illness progresses, however, people with MS experience a sharp decline in employment. The average employment rate for people with MS in the US and internationally is 40% (Bishop, Sheppard-Jones et al., 2013; Julian et al., 2008; Li et al., 2018; Schiavolin et al., 2013). As many as 80% of people with MS who are working at the time of diagnosis are no longer in the workforce within 10 years (McFadden et al., 2012). The impact of MS on employment results from a complex interaction of personal, functional, financial, and psychosocial variables (Chiu, Chan, Bishop, Cardoso, & O’Neil, 2013; Roessler et al., 2015).

The physical and cognitive symptoms of MS have consistently been identified as being the primary predictors of job loss, although demographic and environmental factors also play a role (Bishop & Rumrill, 2015; Nissen & Rumrill, 2016). Although the impact on employment of the person’s home and community environments has received very little research attention, several recent studies suggest that residential characteristics such as accessibility and affordability, access to transportation, and access to needed services have a significant impact on whether people with MS are employed, stay employed, or return to work (Bishop, Roessler et al., 2013; Bishop, Chan et al., 2015).

For vocational rehabilitation professionals, the troubling employment statistics among people with MS underscore the importance of understanding the many factors associated with disengagement from employment, identifying effective and comprehensive employment interventions, and ensuring that they are made available and provided in a timely manner. Of course, continuing low employment rates among those living with MS is not solely a concern of professionals. Research by Roessler et al. (2015) showed that Americans with MS are gravely concerned about their employment prospects and often dissatisfied with professional and legislative responses to their concerns. In their survey of more than 1,900 Americans with MS, Roessler et al. identified high-priority employment concerns including access to rehabilitation professionals, implementation and enforcement of the Americans with Disabilities Act Amendments Act, health care and health insurance coverage (especially the provisions of the Affordable Care Act), and Social Security disability programs. These and other high-priority employment concerns must be addressed in rehabilitation planning and service delivery if the disappointing employment outcomes that presently plague Americans with MS are to improve.

The problem of workplace discrimination was underscored in several focus groups of people with MS conducted by Meade et al. (2016). Focus group members identified discrimination and unfair treatment at work as one of the top agenda items for improving the rate of labor force participation among people with MS. Similarly, 38 percent of callers into Kent State University’s MS Employment Assistance Service hotline since 1999 have sought assistance with interpreting their legal rights and/or redressing employer discrimination (Nissen & Rumrill, 2016).

No discussion of workplace factors is complete without consideration of the work climate regarding disclosure of MS to one’s employer, supervisor, and co-workers. Vickers (2012) explored the complexity of the disclosure decision via in-depth interviews with 20 adults with MS who were currently employed or were unemployed but had work histories. She noted that adults with MS approached the disclosure process with fears that others would see them as less competent, thereby threatening their ability not only to continue working but also to secure employment in the future. According to Vickers (p. 187), trust between worker and employer is at the heart of willingness to disclose, and interviewees cited many employer actions eroding that trust, e.g., exaggerating all the support needed, referring to the accommodations as “unreasonable demands,” and manifesting other forms of “discrimination and bullying to force the worker out.” Examples of discriminatory behavior included unreasonable increases in work goals or responsibilities and in monitoring, critiquing, and recording of work performance inconsistent with that experienced by other workers. Fortunately, Simmons et al. (2010), based on data from two large samples of adults with MS, learned that respondents were much more likely to attribute their unemployment to disease factors than to circumstances in the work environment. Consequently, they advocated an “appropriately timed and advocacy-supported disclosure that could well lead to better understanding and a more effective accommodation of people with multiple sclerosis in the workplace” (p. 934). They also emphasized the importance of educational programs for the newly diagnosed addressing early advocacy-supported disclosure procedures and accommodation techniques for symptom-related work problems before it is too late. Julian et al. (2008) provided examples of accommodations to address symptom-related work problems such as more flexible work hours, more frequent breaks, ergonomic changes in equipment to address upper and lower body limitations, and job simplification or other compensatory strategies to minimize the impact of cognitive problems on job performance.

Research demonstrates the importance of identifying effective vocational rehabilitation interventions for people with MS that emphasize reasonable accommodations, effective disclosure, self-advocacy strategies, job attainment, career maintenance, and return-to-work. Unfortunately, despite the significant personal, social, and societal costs of unemployment among people with MS, identifying and implementing effective vocational services have received relatively little research funding or attention. Several employment-focused demonstration projects have been developed over the past three decades, but research evaluating the efficacy of these initiatives has often been characterized by descriptive designs, relatively small samples, and self-reported or qualitative data (Nissen & Rumrill, 2016). Although such research is certainly valuable in enhancing awareness of the employment-related challenges that inhere to MS, researchers must employ experimental designs to establish evidence-based approaches to improving the rate of labor force participation among people with this capricious and intrusive disease.

That said, several recent studies have explored the effectiveness of the state-federal Vocational Rehabilitation (VR) program for people with MS to identify specific aspects of VR that may promote employment success. For example, Chiu et al. (2013) explored which services helped VR participants with MS obtain and maintain employment, after controlling for the effects of demographic covariates and disability-related government benefits. Using a large national data set (the Rehabilitation Services Administration 2009 database) Chiu et al. established that 924 out of 1,920 participants with MS (48.1%) were successfully employed after receiving VR services. Logistic regression analysis indicated that receipt of cash benefits and public medical benefits were negatively associated with employment outcomes, but that counseling and guidance, job placement, on-the-job supports, employment maintenance, and assistive technology services were significant predictors of positive employment outcomes. In a subsequent analysis of 8,715 working aged individuals with MS between 16 and 64 years old who had received VR services between 2007 and 2011, Chiu et al. (2015) found that rehabilitation technology was a particularly effective VR service for enhancing the job retention outcomes of middle-aged and older adults with MS.

Tansey et al. (2015) also used RSA data to explore whether the employment status of VR applicants with MS could be classified based on the type of services provided. They found that participants who were employed at application to VR were more likely to receive services geared toward career stabilization (such as assistive technology and accommodation services, counseling and guidance, and cognitive re-training), whereas unemployed applicants were more likely to receive services focused on job placement (e.g., job readiness, job seeking and job placement services). The provision of VR services reduced the gap in wages between the employed applicant group and the average U.S. worker by approximately 9% and the hour gap (i.e., number of hours worked per week) by 4%. Individuals with MS who were not employed at application did not experience similarly robust outcomes. However, Tansey et al. (2015) also calculated the return-on-investment associated with providing VR services to unemployed persons with MS and found an $8 return for every dollar spent. The return-on-investment for VR consumers with MS who were employed at the time of application was more than $10 for every dollar spent.

Although people with MS have frequently been found to be under-represented in the VR program, these recent studies suggest that VR program services are a potentially effective means of enhancing retention and employment, particularly for those who are currently employed. Continued research in this area, and particularly research identifying the elements of VR that are effective for unemployed consumers with MS, is encouraged.

8. Conclusion

With its onset usually occurring during the prime years of adulthood, MS and its wide-ranging and unpredictable symptoms pose significant psychosocial, health-related, vocational, and community living challenges. The first few years of this intrusive, immune-mediated disease often force people to make significant changes in their daily routines and activities, and career development and economic self-sufficiency are frequent casualties of life with MS.

Even though the vast majority of people with MS have employment histories and most were still working at the time of diagnosis, only a small percentage continue working until retirement age due to a host of career-thwarting demographic, disease-related, and environmental barriers. Customized interventions from vocational rehabilitation professionals that are grounded in the unique features of MS and best practices in the field must be implemented on a widespread basis to improve the bleak employment prospects that currently confront people diagnosed with this capricious and often progressive disease.

Conflict of interest

None to report.