The SEMS Project: Staying Employed With MS

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