Multiple Sclerosis: Medical and Psychosocial Aspects, Impact on Career Development, and Implications...

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

4

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