The SEMS Project: Staying Employed With MS
The SEMS Project: Staying Employed With MS
Description of Project: Multiple sclerosis (MS), a disorder of young and middle aged adults,
 is known to have a grave impact on one's well-being and incurs a significant cost to society
 due to the nearly 80% rate of unemployment. Over the past few decades, research has focused
 on increasing our understanding of the factors that lead to these high rates of unemployment
 in MS and ways to mitigate such factors. However, the majority of investigations examining
 the causes of unemployment in MS have been retrospective and limited their focus to factors
 such as demographics, disease severity and symptoms of MS (e.g., fatigue), and/ or work place
 features and accommodations. Few have examined the more intrinsic, or person-specific factors
 (e.g., personality, coping, health-related behaviors), which are also likely to significantly
 contribute to rates of unemployment in MS. In fact, these investigators have shown that
 personality characteristics, anxiety, depression, coping, and self-efficacy differ between
 individuals who are considering leaving the workforce and those staying employed; even in the
 presence of comparable demographics and disease variables. Based on these findings, and the
 knowledge that fatigue and cognition also greatly contribute to this decision, these
 investigators have proposed a comprehensive intervention that will target both the disease
 and person-specific factors in hope of assisting individuals with MS maintain their
 employment; the ultimate goal being to improve the overall quality of life and health of
 individuals with MS. The proposed modular intervention will be tailored to the individual
 based on a preliminary assessment and consist of cognitive rehabilitation, fatigue and
 symptom management, wellness intervention, psychological intervention, and occupational
 rehabilitation. Outcomes will be assessed following such intervention with the goal being
 either job maintenance or comparable life activities that will ensure continuity of purpose
 and satisfaction in life, health and health maintenance, and overall well-being.
Multiple sclerosis (MS), a disorder of young and middle aged adults, has a grave impact on
 one's well-being and incurs a significant cost to society due to the nearly 80% rate of
 unemployment.1,2 Over the past few decades, research has focused on increasing our
 understanding of the factors that lead to the high unemployment rates in MS and ways to
 mitigate such factors. However, the majority of investigations examining the determinants of
 unemployment in MS have been retrospective and limited in their focus to factors such as
 demographics, disease symptoms and severity, and/or work place features and accommodations.
 Few have examined the more intrinsic, or person-specific factors (e.g., personality, coping,
 health-related behaviors), which are also likely to contribute to unemployment rates in MS.
 In fact, one of the earliest investigations examining the "common" factors associated with
 unemployment in MS asserted that premorbid personality, education level, quality of
 environment, and social/family network were likely to affect how an individual with MS
 reacted to their illness, including attitudes towards employment.2 By applying a new
 conceptual model that incorporates such person-specific factors, and controls for the more
 typical demographic and disease variable predictors of unemployment in persons with MS, these
 investigators have shown that personality characteristics, anxiety, depression, coping, and
 self-efficacy differ between individuals who are considering leaving the workforce and those
 who stay employed. Perhaps most striking, was the finding that these individuals had an
 average disease duration of only 6.7 years compared to 10.4 years of those staying employed.
 Moreover, 62% were within 5 years of diagnosis compared to only 36% among those staying
 employed. This nearly double rate may reflect poor adjustment to illness rather than a result
 of greater disability per se. Based on these findings, these investigators postulate that
 individuals who are considering leaving the workforce or reducing work hours could benefit
 from early intervention targeting person-specific vulnerability factors. Such intervention
 should not only address the cognitive, psychological, and physical consequences of MS, but
 also attend to vital premorbid and psychological factors (e.g., anxiety, coping,
 self-efficacy), which in some ways may better account for why individuals leave the
 workforce. Moreover, given the negative psychological and health consequences of
 unemployment, in general, it is imperative that we assist such individuals in maintaining
 their employment and adjustment to MS to ward of further reductions in overall well-being and
 quality of life. Thus, the proposed investigation aims to assist individuals with MS maintain
 their employment by developing a comprehensive intervention that will target both the disease
 and person-specific factors associated with unemployment in MS; the ultimate goal being to
 improve the overall quality of life and health of individuals with MS. The proposed modular
 intervention will be tailored to the individual based on a preliminary assessment, and it may
 consist of any or all relevant components of cognitive rehabilitation, fatigue and symptom
 management, wellness intervention, and psychological intervention. Outcomes will be assessed
 following such intervention, with the goal of enhancing greater commitment to work and job
 maintenance that will ensure continuity of purpose and satisfaction in life, health and
 health maintenance, and overall well-being. We will also assess change and process variables
 throughout the intervention to gain a better sense of the factors that facilitate change
 across these interventions. In sum, the specific aims of the proposed investigation are to:

 Specific Aim 1: Develop and pilot a comprehensive and personally responsive (modular)
 intervention to assist individuals with MS remain in the workplace and examine the factors
 most associated with such change.

 Specific Aim 2: Examine the immediate and long-term (3 month) outcomes of this intervention
 on functioning, well-being, self-efficacy, disease management, health, and overall quality of
 life.
Inclusion Criteria:

 -  diagnosed with MS based on McDonald Criteria

 Exclusion Criteria:

 -  any neurological condition other than MS