Employment and Multiple Sclerosis

by Ann Crickmer, MSW

I would first like to review Stephen Rao's (1991) article on "Cognitive dysfunction in multiple sclerosis. II: Impact on employment and social functioning", a classic in the field. One caveat is necessary however: the research findings he notes were based on studies done before either Betaseron, Avonex or Copaxone were widely available to modify the course of MS. We certainly hope that the statistics will improve with the new treatments even though we do not yet have studies to demonstrate this.

Rao noted that several investigations have shown that 50 to 80% of MS patients are unemployed within 10 years of disease onset. This is onset of symptoms, not diagnosis, which before MRIs became common could predate a diagnosis by many years. In one study of 312 patients attending a major University-based MS Clinic, physical disability and demographic variables accounted for less than 14% of the variance in explaining the high rate of unemployment. He also discusses the fact that research has shown that the frequency of cognitive impairment in MS patients is substantially higher (43 to 65%) than previously estimated. Overall findings of his study suggest that MS patients with cognitive impairment experience a greater disturbance in activities of daily living than cognitively intact MS patients.

Since cognitive impairment is the most common reason people become either under or unemployed we should spell out aspects of this which have been studied in the literature. Most studied have been memory retrieval and information processing speed. Other factors are sustained attention or concentration lapses, learning, and executive functions. Under the name executive functions is included: adapting to novel situations (overcoming strong habitual responses), generating alternative solutions to problems, engaging in conceptual reasoning, self-regulating behavior, decision making, error correction and planning functions. Not all executive skills are affected to the same extent (Foong et al 1997). People who were still employed were impaired in significantly fewer cognitive domains. Those who continued to work despite global cognitive deficits had spontaneously adopted strategies to compensate for their physical and intellectual limitations. These include faithful use of tape recorders, as well as other mnemonic strategies, careful scheduling of work or classes to minimize the impact of fatigue and lapses in concentration, and substantial job restructuring in collaboration with their employers. (Beatty et al 1995)

Several brief screening batteries of neuropsychological tests of cognitive functioning have been developed for research use, however, until recently tests of executive functioning have not been included in the battery (Foong et al 1997). Assessing such capacities would be particularly important for people for whom rehabilitation or other interventions are being considered (Basso et al 1996). Rao stresses that the impact of cognitive functions on unemployment underscores the need for timely and accurate assessment of cognitive deficits in MS. Results of neuropsychological testing can alter an employer's expectations of the patient, allowing for adaptations to occur in the work setting and enabling the patient to maintain employment. Patients with cognitive dysfunction may also be candidates for formalized cognitive retraining programs, the goal of which might be to teach compensatory techniques to enhance memory retrieval, sustained attention and executive functions. Finally, neuropsychological testing may play a role in disability determinations. My experience has been that the subtle, invisible cognitive symptoms are very difficult to document for either private or SSDI reviewers. Those with cognitive dysfunction are less likely to receive disability benefits or may receive benefits later than those with visible motor symptoms or fatigue.

Another reason that an accurate diagnosis of cognitive symptoms is important is, as Rao notes, that family members may incorrectly attribute the patient's cognitive problems to obstinacy, depression, or other forms of emotional disturbance. Incorrect causal attributes result in unnecessary stress for patients and family members. When they eventually learn that cognitive disturbance can be a symptom of the disease, feelings of relief frequently ensue.

Cognitive dysfunction (as measured by the number of tests failed in the neuropsychological battery) proves to be a predictor of handicap in everyday life, even in patients in the incipient phase of MS. (Amato et al 1995). In this study, patients with a mean disease duration of only 1.58 years and a low-level of neurological disability exhibited defects in verbal memory and abstract reasoning when compared with normal subjects. Sometimes it even appears as a presenting symptom. They found relative sparing of immediate recall. Foong (1997) notes that attention deficits are known to be present early in the disease, even in some patients with clinically isolated lesions (optic neuritis). It is important to recognize that cognitive functions do not correlate with physical disability (EDSS), which is why many medical professionals have underestimated cognitive dysfunction because such an evaluation is not commonly included in the scales used to measure disability in MS. It is important to realize that the progression of cognitive decline could not be predicted from other disease variables. The authors state that the progression of cognitive deterioration should be considered as one of the characteristics of MS (Kujala et al 1997) even though not everyone with MS experiences cognitive damage. Their study indicated that incipient and mild cognitive deficits observed initially in deteriorated patients tended to progress during the follow-up period of about 3 years. By contrast, the initially cognitively preserved, but physically similarly disabled patients, showed substantial neuropsychological stability over the same period.

In recent years it was hypothesized that cognitive problems were primarily associated with frontal lobe damage, but two new studies (Foong et al 1997, Rovaris et al 1998) have challenged this. Foong's study highlights the difficulties in trying to attribute specific cognitive abnormalities to focal brain pathology in the presence of widespread brain disease. This model, which stems from earlier observations of patients with single lesions, is being superceded by functional imaging studies that note the contributions of several brain regions to the performance of a given task. Neither frontal nor total lesion load correlated with physical disability, although total brain MRI lesion load is associated with cognitive decline in MS patients (Rovaris et al 1998). The extent of brain damage correlated with the degree of cognitive decline in MS, although strategically located MS lesions may also provoke severe cognitive dysfunction in the absence of an extensive lesion load.

All the studies of the various cognitive functions point to the importance of early medical intervention in the disease process, to preserve the hidden cognitive functions which people with MS are at risk of losing, and thus to prolong the option of employment. Some MS centers in the country are experimenting with instruments for evaluation of these functions to be used in routine MS testing, but this has not yet become common.

Was this information helpful? Then please consider making a donation. We are a small, independent nonprofit agency and are dependent on donations from our supporters. Thank you from all the staff at the MSA.

References:

Amato, M. P. et. al., Cognitive impairment in early-onset multiple sclerosis., Arch Neurol. 1995;52:168-172.

Basso, M. R. et. al., Screening for cognitive dysfunction in multiple sclerosis., Arch Neurol. 1996;53:980-984.

Beatty, W. W., et. al., Demographic, clinical, and cognitive characteristics of multiple sclerosis patients who continue to work. J Neuro Rehab.1995;9:167-173.

Foong, J. et. al., Executive function in multiple sclerosis: The role of frontal lobe pathology., Brain 1997;120:15-26.

Kujala, P. et. al., The progress of cognitive decline in multiple sclerosis: A controlled 3-year follow-up., Brain 1997;120:289-297.

Rao, S. M. et. al., Cognitive dysfunction in multiple sclerosis. II Impact on employment and social functioning., Neurology 1991;41:692-696.

Rovaris, M. et. al., Relation between MR abnormalities and patterns of cognitive impairment in multiple sclerosis., Neurology 1998;50:1601-1608.




	Employment and Multiple Sclerosis *by Ann Crickmer, MSW* I would first like to review Stephen Rao's (1991) article on "Cognitive dysfunction in multiple sclerosis. II: Impact on employment and social functioning", a classic in the field. One caveat is necessary however: the research findings he notes were based on studies done before either Betaseron, Avonex or Copaxone were widely available to modify the course of MS. We certainly hope that the statistics will improve with the new treatments even though we do not yet have studies to demonstrate this. Rao noted that several investigations have shown that 50 to 80% of MS patients are unemployed within 10 years of disease onset. This is onset of symptoms, not diagnosis, which before MRIs became common could predate a diagnosis by many years. In one study of 312 patients attending a major University-based MS Clinic, physical disability and demographic variables accounted for less than 14% of the variance in explaining the high rate of unemployment. He also discusses the fact that research has shown that the frequency of cognitive impairment in MS patients is substantially higher (43 to 65%) than previously estimated. Overall findings of his study suggest that MS patients with cognitive impairment experience a greater disturbance in activities of daily living than cognitively intact MS patients. Since cognitive impairment is the most common reason people become either under or unemployed we should spell out aspects of this which have been studied in the literature. Most studied have been memory retrieval and information processing speed. Other factors are sustained attention or concentration lapses, learning, and executive functions. Under the name executive functions is included: adapting to novel situations (overcoming strong habitual responses), generating alternative solutions to problems, engaging in conceptual reasoning, self-regulating behavior, decision making, error correction and planning functions. Not all executive skills are affected to the same extent (Foong et al 1997). People who were still employed were impaired in significantly fewer cognitive domains. Those who continued to work despite global cognitive deficits had spontaneously adopted strategies to compensate for their physical and intellectual limitations. These include faithful use of tape recorders, as well as other mnemonic strategies, careful scheduling of work or classes to minimize the impact of fatigue and lapses in concentration, and substantial job restructuring in collaboration with their employers. (Beatty et al 1995) Several brief screening batteries of neuropsychological tests of cognitive functioning have been developed for research use, however, until recently tests of executive functioning have not been included in the battery (Foong et al 1997). Assessing such capacities would be particularly important for people for whom rehabilitation or other interventions are being considered (Basso et al 1996). Rao stresses that the impact of cognitive functions on unemployment underscores the need for timely and accurate assessment of cognitive deficits in MS. Results of neuropsychological testing can alter an employer's expectations of the patient, allowing for adaptations to occur in the work setting and enabling the patient to maintain employment. Patients with cognitive dysfunction may also be candidates for formalized cognitive retraining programs, the goal of which might be to teach compensatory techniques to enhance memory retrieval, sustained attention and executive functions. Finally, neuropsychological testing may play a role in disability determinations. My experience has been that the subtle, invisible cognitive symptoms are very difficult to document for either private or SSDI reviewers. Those with cognitive dysfunction are less likely to receive disability benefits or may receive benefits later than those with visible motor symptoms or fatigue. Another reason that an accurate diagnosis of cognitive symptoms is important is, as Rao notes, that family members may incorrectly attribute the patient's cognitive problems to obstinacy, depression, or other forms of emotional disturbance. Incorrect causal attributes result in unnecessary stress for patients and family members. When they eventually learn that cognitive disturbance can be a symptom of the disease, feelings of relief frequently ensue. Cognitive dysfunction (as measured by the number of tests failed in the neuropsychological battery) proves to be a predictor of handicap in everyday life, even in patients in the incipient phase of MS. (Amato et al 1995). In this study, patients with a mean disease duration of only 1.58 years and a low-level of neurological disability exhibited defects in verbal memory and abstract reasoning when compared with normal subjects. Sometimes it even appears as a presenting symptom. They found relative sparing of immediate recall. Foong (1997) notes that attention deficits are known to be present early in the disease, even in some patients with clinically isolated lesions (optic neuritis). It is important to recognize that cognitive functions do not correlate with physical disability (EDSS), which is why many medical professionals have underestimated cognitive dysfunction because such an evaluation is not commonly included in the scales used to measure disability in MS. It is important to realize that the progression of cognitive decline could not be predicted from other disease variables. The authors state that the progression of cognitive deterioration should be considered as one of the characteristics of MS (Kujala et al 1997) even though not everyone with MS experiences cognitive damage. Their study indicated that incipient and mild cognitive deficits observed initially in deteriorated patients tended to progress during the follow-up period of about 3 years. By contrast, the initially cognitively preserved, but physically similarly disabled patients, showed substantial neuropsychological stability over the same period. In recent years it was hypothesized that cognitive problems were primarily associated with frontal lobe damage, but two new studies (Foong et al 1997, Rovaris et al 1998) have challenged this. Foong's study highlights the difficulties in trying to attribute specific cognitive abnormalities to focal brain pathology in the presence of widespread brain disease. This model, which stems from earlier observations of patients with single lesions, is being superceded by functional imaging studies that note the contributions of several brain regions to the performance of a given task. Neither frontal nor total lesion load correlated with physical disability, although total brain MRI lesion load is associated with cognitive decline in MS patients (Rovaris et al 1998). The extent of brain damage correlated with the degree of cognitive decline in MS, although strategically located MS lesions may also provoke severe cognitive dysfunction in the absence of an extensive lesion load. All the studies of the various cognitive functions point to the importance of early medical intervention in the disease process, to preserve the hidden cognitive functions which people with MS are at risk of losing, and thus to prolong the option of employment. Some MS centers in the country are experimenting with instruments for evaluation of these functions to be used in routine MS testing, but this has not yet become common. Was this information helpful? Then please consider making a donation. We are a small, independent nonprofit agency and are dependent on donations from our supporters. Thank you from all the staff at the MSA. References: Amato, M. P. et. al., Cognitive impairment in early-onset multiple sclerosis., Arch Neurol. 1995;52:168-172. Basso, M. R. et. al., Screening for cognitive dysfunction in multiple sclerosis., Arch Neurol. 1996;53:980-984. Beatty, W. W., et. al., Demographic, clinical, and cognitive characteristics of multiple sclerosis patients who continue to work. J Neuro Rehab.1995;9:167-173. Foong, J. et. al., Executive function in multiple sclerosis: The role of frontal lobe pathology., Brain 1997;120:15-26. Kujala, P. et. al., The progress of cognitive decline in multiple sclerosis: A controlled 3-year follow-up., Brain 1997;120:289-297. Rao, S. M. et. al., Cognitive dysfunction in multiple sclerosis. II Impact on employment and social functioning., Neurology 1991;41:692-696. Rovaris, M. et. al., Relation between MR abnormalities and patterns of cognitive impairment in multiple sclerosis., Neurology 1998;50:1601-1608.
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