multiple sclerosis: medical and psychosocial aspects, impact on career development, and implications...
TRANSCRIPT
Multiple Sclerosis:Medical and Psychosocial Aspects, Impact on Career
Development, and Implications for
Rehabilitation Counselors
Phillip D. Rumrill, Ph.D., CRCKent State University
Multiple Sclerosis (MS)
One of the most common neurological disorders in the world
Characterized by lesions in the central nervous system (brain and spinal cord)
Destroys the myelin sheath that covers nerve tissue
Symptoms are determined by location of lesions
Unique Features of MS
Onset in early-middle adulthood Range of symptoms Capricious disease process High incidence among women Presence of cognitive impairment Normal life expectancy Impact on career development
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History, Risk Factors, Causes
Dates back to 14th Century Affects as many as 1/2 million
people in the United States Most common among women of
European descent (2/3 people with MS are women)
Cause thought to be a combination of environmental, genetic, and auto-immune factors
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Courses and Progression
Relapsing-Remitting MS Clearly defined flare-ups & recovery
periods Primary Progressive MS
Slow and steady decline in functioning Secondary Progressive MS
Relapsing-Remitting progressive Progressive Relapsing
Steady, progressive decline with relapses
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Diagnosis
McDonald Criteria Magnetic resonance imagining (MRI) Positron emission tomography (PET) Predict: frequency, duration, &
intensity
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Physiological Effects
Fatigue Deconditioned Fatigue Short-Circuiting MS Fatigue
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Physiological Effects
Motor Disturbances Spasticity Weakness Ambulation
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Physiological Effects
Numbness and Tingling Tremor Visual Impairments Bowel and Bladder Dysfunction Sexual Dysfunction
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Psychological Effects
Cognitive Dysfunction Affective Disorders Psychological Adjustment
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Treatment
Adrenocorticotropic hormones Corticosteroids Emergent medications:
Interferon beta-1a Interferon beta-1b Glatiramer acetate Mitoxantrone Natalizumab
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MS & the World of Work
Importance of work: Identity Financial benefits Socialization Sense of purpose Group membership Health insurance
MS and Employment
90 to 95% of people with MS have employment histories
Two-thirds were still working at the time of diagnosis
25 to 40% retain employment as the disease progresses
Factors Associated with Unemployment
Gender Education Symptom type Course and severity Job type Employer attitudes Workplace discrimination
Unemployed People with MS
3/4 leave jobs voluntarily 4/5 feel they can work 3/4 would like to work
Employment Concerns Survey of People with MS
Created a survey including 32 critical employment-related concerns
Gathered responses in yes/no format on two dimensions: importance and satisfaction
Identified strengths and weaknesses among items
Sample (N=1310)
Female = 79% Caucasian = 92% Average age = 50 Unemployed = 57% 12 years education = 97% 16 years education = 40% Urban/suburban = 74%
Strengths% Imp98
97
95
Are treated with respect by service providers
Are encouraged to take control of their lives
Have access to service providers
%Sat61
56
51
Employment Weaknesses%Imp95
95
95
95
95
Have access to reasonably priced prescription medicationsKnow about available employment and social servicesHave adequate health insurance so that they can recover and return to work
Are treated fairly by employer during hiring process
Receive up-to-date, easily understood information about benefits and work incentives from the Social Security Administration
%Dis78
75
73
73
72
Employment Weaknesses (cont)%Imp94
93
91
91
89
Have their needs considered in the development of Social Security ProgramsKnow their rights regarding job-related physical examinationsHave adequate financial help to stay on the job
Have opportunities for home-based employment
Have assistance in coping with stress on the job
%Dis74
77
81
72
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From Work to QOL: A Vocational Rehabilitation Model
Predictors of QOL Educational attainment Employment status Stress/coping level Number of symptoms Persistence of symptoms
R=.66, R2=.43, p<.001
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Factors Associated with Labor Force Participation
Gender 80% of women with MS unemployed 66% of men with MS unemployed
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Factors Associated with Labor Force Participation
Socioeconomic Status More likely to leave work force if have
working spouse More likely to stay in work force if
have higher education & larger savings
Higher-level employees have more flexibility and autonomy in modifying job
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Factors Associated with Labor Force Participation
Age Unemployment increases as a linear
function of age: Significant relationship between age and
MS-related functional disability Older people with MS may have the
financial means to stop working
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Factors Associated with Labor Force Participation
Physiological Symptoms Large reason for people with MS to
leave the work force Fatigue Mobility problems Ambulation difficulties
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Factors Associated with Labor Force Participation
Course and Disease Progression Least likely to be employed if:
Chronic and Progressive MS Higher severity & number of persistent
symptoms
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Factors Associated with Labor Force Participation
Cognitive Dysfunction Diminished:
Rate of learning Short-term memory Long-term memory Abstract reasoning abilities
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Factors Associated with Labor Force Participation
Psychological and Emotional Factors While often accompany MS, not
frequent reason given for leaving work force
Much smaller impact on employment status than gender, age, physiological symptoms
People reporting problems with emotional lability significantly less likely to be employed
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Factors Associated with Labor Force Participation
Workplace Discrimination National survey (Roessler, et al., 2002):
Treated unfairly in hiring process: 73% Were denied reasonable accommodations:
58% Received lower pay: 53% Were refused schedule modifications: 59% Received inadequate health insurance: 73% Received from employers little/no information
about legal rights: 69%
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Factors Associated with Labor Force Participation
Disability Benefits People with MS progress at higher and
faster rates than people with other disabilities from:
Active employment Short-term disability Long-term disability Social Security Disability Insurance “Too disabled to work” message
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Federal Laws that Provide Employment-Related Protections
Americans with Disabilities Act (ADA) Covered employers Reasonable accommodations Disability Qualified Essential functions Undue hardship Other employment protections Enforcement
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Federal Laws that Provide Employment-Related Protections
The Family and Medical Leave Act Requirements “Serious health condition” definition Coverage Foreseeable requires advance notice Verification required
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MS-Specific Interventions
MS Employment Assistance Service Kent State University Operation Job Match Career Crossroads: Employment and
MS
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Programs for People with All Types of Disabilities
The State-Federal Vocational Rehabilitation program
Disability and Business Technical Assistance Centers
The Job Accommodation Network