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Chapter 21 The Psychosocial Consequences of Multiple Sclerosis
21 The Psychosocial Consequences of Multiple Sclerosis Luanne Metz
Multiple sclerosis (MS) is a chronic, disabling disease that requires many personal and family adjustments.1 It affects a person’s social status and ability to function and fulfill his or her usual roles. Health-related quality of life (HRQL) measures an individual’s perceptions of the consequences of disease on his or her well-being and function. A person’s sociodemographic profile reflects his or her social status. Although MS leads to social dysfunction independent of previous socioeconomic status,2 both HRQL and social status are reduced compared with people who are healthy and both worsen with increasing disability.3–7 These changes reflect the impact of the physiological and psychosocial consequences of MS. There is increasing recognition that it is important for health care interventions to improve HRQL, as well as disease-related impairment.8 Management of the psychosocial consequences of MS should therefore complement medical intervention.2 Although management strategies have been described to address most aspects of MS, development of strategies to help physicians manage the psychosocial consequences on their patients has been hampered by societal and resource variation. Also, what is most important to patients is often quite different than what physicians consider most important.9 Perhaps this discrepancy is because physicians are primarily trained to manage medical issues, whereas others are more likely to have the skills and resources to manage psychosocial issues. Current literature identifies the importance of education, support, and teaching patients to cope10,11 but is primarily aimed at nurses, social workers, and psychologists, although many people with MS have no access to such expertise. Although team management may ensure attention to these issues, few physicians outside of MS clinics have developed ways to help their patients deal with them. Understanding the common psychosocial issues that occur, and developing strategies to help patients address them, should improve the lives of those with MS. The psychosocial consequences of MS affect nearly every aspect of a person’s life and that of his or her partner (Table 21.1). There is interaction among many issues, and socioeconomic status, gender, and age affect the impact 329
Other Relationships Perception and role changes Self-image and sexuality Disclosing the diagnosis Dating Chance of never marrying Other family members Friends and co-workers Neighbors
Pregnancy Altered number of children Heredity issues Therapy discontinuation
Economics Decreased income Patients and caregivers Increased costs Vulnerability to financial scams
Insurance Availability Disability Life Health and prescription
Education Completion Inability to complete Modifications required Altered career plans Required due to MS Choice due to MS Retraining
Partner Role changes Caregiver strain Anger and guilt Economic burden Personality change Sexuality Risk and fear of divorce
Employment Disclosing diagnosis Unemployment Lost income Lost socialization Decreased HRQL Impaired self-image Underemployment Fewer hours Lost job opportunities May affect caregivers Legal rights
Children What to tell children Children’s concerns Impact on children Ability to care for children and participate in activities Energy and accessibility Fear of losing child custody
Relationship Issues
Psychosocial Issues in Multiple Sclerosis
Socioeconomic Issues
Table 21.1
Community Accessibility Automobile alterations Hand controls Wheelchair lift Public transportation Availability and cost Health care Travel Job access Public buildings Privately owned buildings Loss of independence
Home Accessibility Equipment needs Renovations Need to change homes Isolation Role changes Dependency
Where a Person Lives Home Group home Institution Loss of control
Who a Person Lives With Alone Family or partner Friends or strangers Loss of control
Home and Community Issues
Personal Care Needs Paid or unpaid caregiver Loss of control
Mental Health Mood and anxiety disorders Stress, worry, fear Adjustments and grief Hopelessness and false hope Control and independence Self-esteem Dependency
Hobbies, Interests, and Socialization Inability to participate
Impaired Safety Violence Driving and falls
Neglected Health Screening Accessibility Health focused on MS No primary care provider
Lack of Fitness Lack of time and energy Child care responsibilities Cost and social support Accessibility
Diet Nutrition, fiber, vitamins Often relatively dehydrated
Health and Lifestyle Issues
330 Multiple Sclerosis 2
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331
of most. Management requires an understanding of all the issues to avoid missing opportunities to reduce future impact. It must also be recognized that a poor psychosocial outcome for one person (e.g., loss of employment status) may be a desirable outcome for another. The goals of management must therefore be to assist patients to make informed choices and to address their needs rather than striving for a predetermined standard. Finally, although it is hoped that treatment with disease-modifying therapy will slow the accumulation of disability in many, and perhaps avert it in some, there is still no known way to arrest the disease with certainty. It therefore remains important not to disregard opportunities for risk management and to be realistic about the value of these therapies.
SOCIOECONOMIC ISSUES Employment issues affect nearly everyone with MS in some way, whether they are currently in the labor force or expect to enter it. Employment is usually important from the time the diagnosis is suspected, because patients must decide whether to disclose their diagnosis to employers and co-workers. Disclosure may result in support in the work environment, but perceptions that MS makes people less productive, greater safety risks, too demanding, or too costly, even in the absence of any disability, can result in lost opportunities for job advancement or pressure to leave a job. Patients should be made aware of these potential risks and benefits soon after diagnosis. Underemployment and lost employment opportunities are also common. Patients may be unable to work full time or to achieve expected career goals. This may be due to fatigue, disability, stamina, disease unpredictability, accessibility, or misperceptions regarding their abilities. Women tend to reduce their employment hours earlier than men, probably because women usually carry an unequal share of home and child care responsibilities. On average, employed women work at least 11 hours more in the home per week than employed men.12 These issues may also affect partners and other family members, all referred to as caregivers. They may be denied promotions because of a record of frequent, unexpected absences to care for their spouse, provide transportation or accompany them to appointments, or care for children when the spouse cannot. Inability to travel or to work unpredictable or long hours may also stall their career. In addition, their employment opportunities may be limited by their need to take on additional responsibilities and tasks related to their home and family. Unemployment has the greatest socioeconomic impact of any issue. It is associated with loss of income13–16 and impaired quality of life,6,7 and may result in lack of health or prescription insurance, therefore decreasing access to health care. Within 10 years of disease onset, less than 50 percent of people with MS remain employed.17 This loss of income causes considerable financial burden to patients and their families. Even with minimal disability (Kurtzke Expanded Disability Status Scale [EDSS] score less than 3.0), unemployment results in an average yearly cost per patient of more than $5500. Caregivers to people in
332 Multiple Sclerosis 2 this disability group also lose almost $650 per year because of lost work days. Family losses due to unemployment and missed work increase further with disability. Average unemployment costs exceed $13,000 per year at all higher levels of disability. These losses account for the greatest proportion of disease costs (59 to 78%) in all but the most severely disabled patients (EDSS more than 8.0).13–16 Several factors have been identified that are associated with unemployment.18–30 Disease-related factors associated with increased unemployment include greater disability, longer disease duration, progressive course, and several specific types of physical impairment, including fatigue, spasticity, impaired mobility, poor coordination, impaired vision, and impaired cognition. Associated demographic factors include older age, female sex, being married, higher family income, and fewer years of education. Job-related and social factors include employment in heavy physical labor, employment in the private sector, and lack of transportation. Willingness of the employer to accommodate the disability, particularly by allowing a switch to a more sedentary role, has a positive effect on unemployment. Providing patients with this information may allow them to consider the ability of their employer to make accommodations and may lead them to consider retraining for a role more likely to accommodate disability. Loss of the ability to work is also associated with impaired quality of life. People who are single tend to benefit more from working than those that are married, possibly related to the social aspects of employment.6 Job satisfaction derived from working, however, is also lower in people with MS than in other disabled workers.6,7 This is sometimes related to an increase in MS symptoms or to impaired accessibility. Improvement in MS symptoms or working conditions may improve job satisfaction and potentially help maintain employment. Although most people have completed their education before being diagnosed with MS, up to 10 percent have not. This includes everyone with childhood onset. Disability may make it impossible to complete education. Some people choose to end their education earlier than otherwise planned even when not disabled, whereas others choose an alternate career path. However, lower levels of completed education are associated with lower income and higher risk of unemployment. The potential benefits of education, including its social benefits, should therefore be addressed, and measures that support completion should be supported. This may require physical adaptations or adjustments to workload and period of study. An educational psychologist, pediatrician, or pediatric neurologist may be needed to help deal with these issues in children with MS. Insurance availability may be affected by employment changes, as well as by loss of employment. Insurance may not cover pre-existing conditions. In some countries, health and prescription insurance may even be denied. New life insurance policies, sometimes related to employment, may become unattainable or unaffordable. At the time of diagnosis, patients should be advised to learn the details of all their current insurance policies and consider insurance issues when contemplating employment change. Career opportunities may become limited if they are unable to change jobs without sacrificing insurance. Those not in the labor force at the time of their diagnosis may be particularly adversely affected,
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because they may never be eligible for disability insurance. The risk of unemployment is so high, however, that people with MS should have the opportunity to protect their future by maintaining insurance benefits and, when possible, choose jobs that offer insurance plans that do not exclude pre-existing conditions. Employee rights and employer responsibilities, which vary regionally, should also be discussed. In addition to the high costs of unemployment, there are other substantial economic consequences. These costs may include health care, medications, alternative therapies, equipment, home and automobile adaptations, personal care, home care, and long-term care. Other expenses, such as child care, transportation, recreation, travel, housekeeping, and home maintenance, may be greater for those with MS because of increased need or specialized service requirements. People with MS are also susceptible to financial losses caused by the purchase of “miracle treatments” for MS. The availability of insurance and national health and social support systems generally determine which costs are born by the patient, by third-party payers, and by the public sector. Most costs, however, increase with disability.13–16 Patients should be informed of the types of expenses they may incur so they can plan their finances accordingly.
RELATIONSHIP ISSUES Illness of any kind is hard on relationships, but chronic disabling illness is even harder. Because more 75 percent of people with MS are married,31 marital issues commonly need to be addressed. The stress MS places on these relationships goes beyond socioeconomic issues. Early in the disease, partners face disease uncertainty and an unpredictable need for their assistance and emotional support. They may need to make adjustments for social and family events and take on new tasks and responsibilities. Couples and individuals must grieve their losses, worry about their uncertain future, and reconsider all the plans they have made. Whereas partners often fear the loss of their spouse as they’ve always known them, patients commonly fear abandonment. Caregiver strain is therefore high, even early in the disease in the absence of significant disability.32–34 As disability increases and fewer tasks and responsibilities can be managed, roles change. A partner and lover takes on more of a caregiver role, and the person with MS must learn to accept care. Anger and guilt are common reactions. Sexuality may become more of an issue, resulting from both biological and psychological components. The hardest issues for a caregiver to deal with, however, are usually cognitive, personality, and behavior changes. These changes usually occur fairly late in disease, and many patients never reach that stage. Changes, adaptations, and strains have considerable psychological impact on both patients and caregivers. Divorce and separation rates increase with disability.31–35 Preventive strategies may be beneficial in maintaining healthy marriages. Optimizing medical management, expressing support for the challenges they face, encouraging caregivers to avoid burnout, and offering contact information
334 Multiple Sclerosis 2 for patients and partners to investigate potential support may be helpful. Counseling may also be necessary. People with MS also have a decreased chance of ever marrying, especially if they are young or have greater disability. Disability or anticipated disability also alters self-perception, sexuality, and the perceptions of others, which affects dating, even in those without disability. Also, persons with MS must decide when to disclose their diagnosis. Other relationships may also be affected. Parents may resume a caregiver role, even when they are not needed as caregivers. They often become more involved in the life of their affected grown child than is welcome. This can increase marital stress. Children most commonly worry about whether their parents will be able to continue caring for them, a fear often shared by parents. Children who are unaware of the diagnosis often notice increased worry and stress in the house. This is usually more frightening than the truth. Although parents with MS may be unable to participate in some of their children’s activities because of inaccessibility or fatigue, it is the emotional effects of the disease that bother children the most. If parents are unable to care for their children, paid child care may be necessary. The psychological impact of this loss may require counseling. MS may also effect decisions regarding family size. Some people decide to have no children, or fewer children, because they fear they will be unable to care for them. Sometimes spouses fear they will be left caring for both children and a disabled partner. Other patients worry that raising children will adversely affect their own health. Some people with MS do not have children because of fears about hereditary factors, and some women do not want to discontinue MS therapies to permit pregnancy. These issues may have a different psychological impact on men and women and on marriages. Physicians should discuss the effect of pregnancy on MS, potential management of the increased postpartum attack risk, and how to manage discontinuation of MS therapy (see Chapter 17). The genetic risks should also be discussed or referral made to a clinical geneticist or genetic counselor. This information will ensure that patients are making decisions based on adequate and accurate information.
HOME AND COMMUNITY ISSUES MS disability is associated with an increased chance of living alone, and severe disability often requires institutional care. Continued care in the home, surrounded by family members, is in large part dependent on financial resources, insurance, and the ability of family members to be involved in ongoing care needs. The quality of institutional care is also largely dependent on these factors. Early planning and avoidance of caregiver burnout can be important. Respite care, including day programs, and allowing others to help can reduce caregiver strain. Neurological disability also results in impaired access within the home and to nearly every aspect of community life. Poor accessibility in the home can
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result in increased risk of injury, need for equipment or costly home alterations, isolation, dependency, loss of role function, and even the need to move to a new home or neighborhood. Mobility outside the home is usually more restricted and less controllable. Transportation problems, building accessibility, and lack of adequate restrooms contribute to this handicap.36 Automobile alterations may be required even if the impaired individual is no longer driving. Public transportation for disabled people is often inconvenient, inadequate, or simply nonexistent. Employment opportunities may be decreased as a result of lack of transportation or lack of an accessible work environment. Shopping, mailing a letter, or getting a haircut may become major ordeals, and leisure and travel opportunities are decreased. Even access to health care may be affected. These issues often lead to increased cost, loss of independence, and social isolation. The psychological consequence of losing the ability to drive is usually significant. Patients are often angry or in denial. This may result in unsafe, and often illegal, continuation of driving. Although use of hand controls may prolong independence, a driving assessment may be helpful in assessing their appropriateness and may provide information on ways to obtain them and fund their installation. Because most people with MS eventually acquire disability, all should be advised of their future mobility risks early in the course of the disease. They can then consider the impact of impaired mobility when making decisions such as job retraining, the type of home to purchase, or the timing of a dream vacation. Community resources may be important in providing patients with practical information about mobility issues in their community. Money and good social support can significantly decrease the impact of poor accessibility.
HEALTH AND LIFESTYLE ISSUES From the time of their initial diagnosis, patients are usually interested in learning about potentially beneficial lifestyle changes. Although there is currently no diet or supplement known to affect MS outcomes, attention to general health maintenance is important. This includes regular exercise, adequate nutrition, and attention to preventive health issues. Adequate fiber and hydration should also be encouraged. Bladder dysfunction leads many with MS to decrease their fluid intake, but dehydration increases fatigue. Unfortunately, because of a lack of time and energy, disability, poor economic status, child care responsibilities, and inadequate social support to meet their increased needs, people with MS are often not able to attend to these issues, even very early in their disease. Lack of exercise is particularly common. Lack of appropriate fitness facilities and few fitness consultants adequately trained to handle the issues faced by those with MS makes fitness even harder to maintain in those with disability. Many MS Society chapters, however, run exercise programs for those with disabilities. Patients should be advised of these issues and supported in their need to reduce other activities, including employment, to maintain their wellness. Evidence that caregiver health, HRQL, and tendency
336 Multiple Sclerosis 2 to exercise are also reduced6,32,33 suggests that caregivers should receive the same advice. Health maintenance also includes appropriate health screening. Need varies according to gender, age, and other health risks, but screening is often neglected by people with disabilities. People with MS may not be capable of transferring to examination tables, spasticity may make examination difficult, or they may simply have so many other issues to deal with that screening is not seen as important enough. Men are less likely to have a primary care provider12 to help them manage their general health needs, and many patients and physicians focus on MS and neglect other health issues. All patients with disability should be reminded that they still require regular health screening. People with disabilities are more likely to be victims of violence. They have fewer opportunities to escape domestic violence and less ability to defend themselves. Because women are most often the victims of violence, these issues are more likely to affect them. Disability may also increase a person’s fear of losing access to their children in marital breakup. The risk of injury caused by falls is also increased. The risk of falls can often be reduced by the use of adequate walking aids and equipment. However, they may be unaffordable (lifts for transfer) or psychologically unacceptable to patients. Some patients prefer the risk of injury to carrying a cane. Use of alternative therapies may also pose a health risk, especially when many are being combined. To many people, their use gives them a sense of control over their disease, often without recognizing there could be risk. People with MS may also lose their ability to continue their hobbies and interests. Participating in or attending sporting or cultural activities may become increasingly difficult. This forces patients to be increasingly sedentary and passive and may increase social isolation. In addition to a high occurrence of psychiatric symptoms and disorders, MS often impairs perception of mental health and emotional roles.3–7,37 These consequences have been measured using the mental health domains of HRQL assessment tools. Common mental health issues include depression, anxiety, adjustment disorders, grief reactions, emotional stress, worry, fear, hopelessness, helplessness, dependency, loss of self-esteem, and loss of control and independence. Many are related to the psychosocial consequences of the disease. Although depression and anxiety often require drug treatment, time for adjustment, education about the disease, inclusion of patients in decision-making processes, and counseling often help patients deal with most of the other issues. Support groups may be helpful and can usually be accessed through local MS societies. Eventually, paid caregivers may be required to meet personal care needs. This may make patients feel abandoned but at the same time feel guilty for feeling that way. The presence of paid caregivers can be both relieving and intrusive, and the relationships that develop between caregivers and patients can be supportive or foster dependency. When 24-hour care is needed, it is often necessary for patients to live in an institution. This may lead to further dependency but can also improve socialization. The psychological impact of these changes is often tremendous for patients and their families. Early planning can increase the care options available, so it is important to be realistic when advising disabled, progressive patients about their prognosis.
The Psychosocial Consequences of Multiple Sclerosis Table 21.2
337
Psychosocial Management: Issues to Address at Each Disease Stage
Newly Diagnosed
Early MS
Later MS: Disabling Disease
General MS information Information about MS and its impact Resource list Community support Lifestyle issues Diet Exercise Risks Disclosure of diagnosis Insurance issues
Role changes Family well-being Mental health Relationships Spousal, children, other Pregnancy Diet and exercise Risks Employment Education and retraining Economic Accessibility Alternative therapies False hopes
Employment Insurance Economics Relationships Living arrangements Transportation Accessibility Diet and exercise Hobbies, interests, and socialization Mental health Personal care needs Risks Health screening Safety: driving and falls
MANAGEMENT STRATEGIES A strategy to approach psychosocial issues can usually be built around the stages of the disease: newly diagnosed, early MS without disability, and MS with disability. At each stage, patients face different problems and different risks need to be addressed to potentially reduce their impact. Table 21.2 lists the issues that should be addressed at each disease stage. Addressing these issues may validate patients’ concerns about common problems or inform them of issues they should address on their own. Sometimes, however, patients should be directed or referred to other sources of information and support. This ensures that they have access to general information and allows them to retain a sense of control. Information and support for most issues related to living with MS can be obtained from national MS societies. These organizations may be the most important partner a physician can have in caring for people with MS.
REFERENCES 1. Murray TJ. The psychosocial aspects of multiple sclerosis. Neurol Clin 1995;13:197–219. 2. Harper AC, Harper DA, Chambers LW, et al. An epidemiological description of physical, social and psychological problems in multiple sclerosis. J Chron Dis 1986;39:305–310. 3. The Canadian Burden of Illness Study Group. Burden of illness of MS. Part II: Quality of life. Can J Neurol Sci 1998;25:30–38. 4. Pfennings L, Cohen L, Ader H, et al. Exploring differences between subgroups of multiple sclerosis patients in health-related quality of life. J Neurol 1999;246:587–591. 5. Murphy N, Confavreux C, Haas J, et al. Quality of life in multiple sclerosis in France, Germany, and the United Kingdom: Cost of Multiple Sclerosis Study Group. J Neurol Neurosurg Psychiatry 1998;65:460–466.
338 Multiple Sclerosis 2 6. Aronson KJ. Quality of life among persons with multiple sclerosis and their caregivers. Neurology 1997;48:74–80. 7. Gulick EE. Correlates of quality of life among persons with multiple sclerosis. Nurs Res 1997;46: 305–311. 8. Vickrey BG. Getting oriented to patient-oriented outcomes. Neurology 1999;53:662–663. 9. Rothwell PM, McDowell Z, Wong CK, Dorman PJ. Doctors and patients don’t agree: cross sectional study of patients’ and doctors’ perceptions and assessments of disability in multiple sclerosis. Br Med J 1997;314:1580–1583. 10. Schwartz CE. Teaching coping skills enhances quality of life more than peer support: results of a randomized trial with multiple sclerosis patients. Health Psychol 1999;18:211–220. 11. Miller CM. The lived experience of relapsing multiple sclerosis: a phenomenological study. J Neurosci Nurs 1997;29:294–304. 12. MacLaren A, Woods NF. Women’s Health and Healthcare Experience. In P Kaplan (ed), Neurologic Disease in Women. New York: Demos, 1998;11–23. 13. The Canadian Burden of Illness Study Group. Burden of illness of MS. Part 1: Cost of illness. Can J Neurol Sci 1998;25:23–30. 14. Grima DT, Torrance GW, Francis G, et al. Cost and health related quality of life consequences of multiple sclerosis. Mult Scler 2000;6:91–98. 15. Asche CV, Ho E, Chan B, Coyte PC. Economic consequences of multiple sclerosis for Canadians. Acta Neurol Scand 1997;95:268–274. 16. Inman RP. Disability indices, the economic costs of illness, and social insurance: the case of multiple sclerosis. Acta Neurol Scand 1984;101(Suppl):46–55. 17. Scheinberg L, Holland N, LaRocca N, et al. Multiple sclerosis: earning a living. N Y State J Med 1980;80:1395–1400. 18. Gronning M, Hannisdal E, Mellgren SI. Multivariate analyses of factors associated with unemployment in people with multiple sclerosis. J Neurol Neurosurg Psychiatry 1990;53:388– 390. 19. Verdier-Taillefer MH, Sazdovitch V, et al. Occupational environment as risk factor for unemployment in multiple sclerosis. Acta Neurol Scand 1995;92:59–62. 20. Mitchell JN. Multiple sclerosis and the prospects for employment. J Soc Occup Med 1981;31: 134–138. 21. Edgley K, Sullivan MJL, Dehoux E. A survey of multiple sclerosis. Part 2: Determinants of employment status. Can J Rehabil 1991;4:127–132. 22. Kornblith AB, La Rocca NG, Baum HM. Employment in individuals with multiple sclerosis. Int J Rehabil Res 1986;9:155–165. 23. Jackson MF, Quaal C, Reeves MA. Effects of multiple sclerosis on occupational and career patterns. Axon 1991;13:16–22. 24. Jacobs LD, Wende KE, Brownscheidle CM, et al. A profile of multiple sclerosis: the New York State Multiple Sclerosis Consortium. Mult Scler 1999;5:369–376. 25. LaRocca N, Kalb R, Scheinberg L, Kendall P. Factors associated with unemployment of patients with multiple sclerosis. J Chron Dis 1985;38:203–210. 26. LaRocca N, Kalb R, Kendall P, Scheinberg L. The role of disease and demographic factors in the employment of patients with multiple sclerosis. Arch Neurol 1982;39:256. 27. Hammond SR, McLeod JG, Macaskill P, English DR. Multiple sclerosis in Australia: socioeconomic factors. J Neurol Neurosurg Psychiatry 1996;61:311–313. 28. Rao SM, Leo GJ, Ellington L, et al. Cognitive dysfunction in multiple sclerosis. II. Impact on employment and social functioning. Neurology 1991;41:692–696. 29. Scheinberg L, Holland N, LaRocca N, et al. Vocational disability and rehabilitation in multiple sclerosis. Int J Rehabil Res 1981;4:61–64. 30. Rozin R, Schiff Y, Kahana E, Soffer D. Vocational status of multiple sclerosis patients in Israel. Arch Phys Med Rehabil 1975;56:300–304. 31. Stenager E, Stenager EN, Knudsen L, Jensen K. Multiple sclerosis: the impact on family and social life. Acta Psychiatr Belg 1994;94:165–174. 32. DesRosier MB, Catanzaro M, Piller J. Living with chronic illness: social support and the well spouse perspective. Rehabil Nurs 1992;17:87–91. 33. Knight RG, Devereux RC, Godfrey HP. Psychosocial consequences of caring for a spouse with multiple sclerosis. J Clin Exp Neuropsychol 1997;19:7–19. 34. McGuinness SD, Metz LM, Lagendyk L, et al. Mild MS impairment is associated with substantial caregiver strain. Int J MS Care 2001;3:4. Available from http://www.mscare.com/
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35. Metz LM, Rose SM, Patten SB, et al. The consequences of MS: disability increases the odds of being separated or divorced. Int J MS Care 2000;2:7. Available from http://www.mscare.com/ 36. Christensen O, Clausen J. Social remedial measures for multiple sclerosis patients in Denmark. Acta Neurol Scand 1977;55:394–406. 37. Rose SM, Fisk JD, Reimer MA, et al. Age and sex differences in health-related quality of life in patients with multiple sclerosis. Mult Scler 1999;5:S49.
Multiple sclerosis (MS) is a chronic, disabling disease that requires many personal and family adjustments.1 It affects a person’s social status and ability to function and fulfill his or her usual roles. Health-related quality of life (HRQL) measures an individual’s perceptions of the consequences of disease on his or her well-being and function. A person’s sociodemographic profile reflects his or her social status. Although MS leads to social dysfunction independent of previous socioeconomic status,2 both HRQL and social status are reduced compared with people who are healthy and both worsen with increasing disability.3–7 These changes reflect the impact of the physiological and psychosocial consequences of MS. There is increasing recognition that it is important for health care interventions to improve HRQL, as well as disease-related impairment.8 Management of the psychosocial consequences of MS should therefore complement medical intervention.2 Although management strategies have been described to address most aspects of MS, development of strategies to help physicians manage the psychosocial consequences on their patients has been hampered by societal and resource variation. Also, what is most important to patients is often quite different than what physicians consider most important.9 Perhaps this discrepancy is because physicians are primarily trained to manage medical issues, whereas others are more likely to have the skills and resources to manage psychosocial issues. Current literature identifies the importance of education, support, and teaching patients to cope10,11 but is primarily aimed at nurses, social workers, and psychologists, although many people with MS have no access to such expertise. Although team management may ensure attention to these issues, few physicians outside of MS clinics have developed ways to help their patients deal with them. Understanding the common psychosocial issues that occur, and developing strategies to help patients address them, should improve the lives of those with MS. The psychosocial consequences of MS affect nearly every aspect of a person’s life and that of his or her partner (Table 21.1). There is interaction among many issues, and socioeconomic status, gender, and age affect the impact 329
Other Relationships Perception and role changes Self-image and sexuality Disclosing the diagnosis Dating Chance of never marrying Other family members Friends and co-workers Neighbors
Pregnancy Altered number of children Heredity issues Therapy discontinuation
Economics Decreased income Patients and caregivers Increased costs Vulnerability to financial scams
Insurance Availability Disability Life Health and prescription
Education Completion Inability to complete Modifications required Altered career plans Required due to MS Choice due to MS Retraining
Partner Role changes Caregiver strain Anger and guilt Economic burden Personality change Sexuality Risk and fear of divorce
Employment Disclosing diagnosis Unemployment Lost income Lost socialization Decreased HRQL Impaired self-image Underemployment Fewer hours Lost job opportunities May affect caregivers Legal rights
Children What to tell children Children’s concerns Impact on children Ability to care for children and participate in activities Energy and accessibility Fear of losing child custody
Relationship Issues
Psychosocial Issues in Multiple Sclerosis
Socioeconomic Issues
Table 21.1
Community Accessibility Automobile alterations Hand controls Wheelchair lift Public transportation Availability and cost Health care Travel Job access Public buildings Privately owned buildings Loss of independence
Home Accessibility Equipment needs Renovations Need to change homes Isolation Role changes Dependency
Where a Person Lives Home Group home Institution Loss of control
Who a Person Lives With Alone Family or partner Friends or strangers Loss of control
Home and Community Issues
Personal Care Needs Paid or unpaid caregiver Loss of control
Mental Health Mood and anxiety disorders Stress, worry, fear Adjustments and grief Hopelessness and false hope Control and independence Self-esteem Dependency
Hobbies, Interests, and Socialization Inability to participate
Impaired Safety Violence Driving and falls
Neglected Health Screening Accessibility Health focused on MS No primary care provider
Lack of Fitness Lack of time and energy Child care responsibilities Cost and social support Accessibility
Diet Nutrition, fiber, vitamins Often relatively dehydrated
Health and Lifestyle Issues
330 Multiple Sclerosis 2
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331
of most. Management requires an understanding of all the issues to avoid missing opportunities to reduce future impact. It must also be recognized that a poor psychosocial outcome for one person (e.g., loss of employment status) may be a desirable outcome for another. The goals of management must therefore be to assist patients to make informed choices and to address their needs rather than striving for a predetermined standard. Finally, although it is hoped that treatment with disease-modifying therapy will slow the accumulation of disability in many, and perhaps avert it in some, there is still no known way to arrest the disease with certainty. It therefore remains important not to disregard opportunities for risk management and to be realistic about the value of these therapies.
SOCIOECONOMIC ISSUES Employment issues affect nearly everyone with MS in some way, whether they are currently in the labor force or expect to enter it. Employment is usually important from the time the diagnosis is suspected, because patients must decide whether to disclose their diagnosis to employers and co-workers. Disclosure may result in support in the work environment, but perceptions that MS makes people less productive, greater safety risks, too demanding, or too costly, even in the absence of any disability, can result in lost opportunities for job advancement or pressure to leave a job. Patients should be made aware of these potential risks and benefits soon after diagnosis. Underemployment and lost employment opportunities are also common. Patients may be unable to work full time or to achieve expected career goals. This may be due to fatigue, disability, stamina, disease unpredictability, accessibility, or misperceptions regarding their abilities. Women tend to reduce their employment hours earlier than men, probably because women usually carry an unequal share of home and child care responsibilities. On average, employed women work at least 11 hours more in the home per week than employed men.12 These issues may also affect partners and other family members, all referred to as caregivers. They may be denied promotions because of a record of frequent, unexpected absences to care for their spouse, provide transportation or accompany them to appointments, or care for children when the spouse cannot. Inability to travel or to work unpredictable or long hours may also stall their career. In addition, their employment opportunities may be limited by their need to take on additional responsibilities and tasks related to their home and family. Unemployment has the greatest socioeconomic impact of any issue. It is associated with loss of income13–16 and impaired quality of life,6,7 and may result in lack of health or prescription insurance, therefore decreasing access to health care. Within 10 years of disease onset, less than 50 percent of people with MS remain employed.17 This loss of income causes considerable financial burden to patients and their families. Even with minimal disability (Kurtzke Expanded Disability Status Scale [EDSS] score less than 3.0), unemployment results in an average yearly cost per patient of more than $5500. Caregivers to people in
332 Multiple Sclerosis 2 this disability group also lose almost $650 per year because of lost work days. Family losses due to unemployment and missed work increase further with disability. Average unemployment costs exceed $13,000 per year at all higher levels of disability. These losses account for the greatest proportion of disease costs (59 to 78%) in all but the most severely disabled patients (EDSS more than 8.0).13–16 Several factors have been identified that are associated with unemployment.18–30 Disease-related factors associated with increased unemployment include greater disability, longer disease duration, progressive course, and several specific types of physical impairment, including fatigue, spasticity, impaired mobility, poor coordination, impaired vision, and impaired cognition. Associated demographic factors include older age, female sex, being married, higher family income, and fewer years of education. Job-related and social factors include employment in heavy physical labor, employment in the private sector, and lack of transportation. Willingness of the employer to accommodate the disability, particularly by allowing a switch to a more sedentary role, has a positive effect on unemployment. Providing patients with this information may allow them to consider the ability of their employer to make accommodations and may lead them to consider retraining for a role more likely to accommodate disability. Loss of the ability to work is also associated with impaired quality of life. People who are single tend to benefit more from working than those that are married, possibly related to the social aspects of employment.6 Job satisfaction derived from working, however, is also lower in people with MS than in other disabled workers.6,7 This is sometimes related to an increase in MS symptoms or to impaired accessibility. Improvement in MS symptoms or working conditions may improve job satisfaction and potentially help maintain employment. Although most people have completed their education before being diagnosed with MS, up to 10 percent have not. This includes everyone with childhood onset. Disability may make it impossible to complete education. Some people choose to end their education earlier than otherwise planned even when not disabled, whereas others choose an alternate career path. However, lower levels of completed education are associated with lower income and higher risk of unemployment. The potential benefits of education, including its social benefits, should therefore be addressed, and measures that support completion should be supported. This may require physical adaptations or adjustments to workload and period of study. An educational psychologist, pediatrician, or pediatric neurologist may be needed to help deal with these issues in children with MS. Insurance availability may be affected by employment changes, as well as by loss of employment. Insurance may not cover pre-existing conditions. In some countries, health and prescription insurance may even be denied. New life insurance policies, sometimes related to employment, may become unattainable or unaffordable. At the time of diagnosis, patients should be advised to learn the details of all their current insurance policies and consider insurance issues when contemplating employment change. Career opportunities may become limited if they are unable to change jobs without sacrificing insurance. Those not in the labor force at the time of their diagnosis may be particularly adversely affected,
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because they may never be eligible for disability insurance. The risk of unemployment is so high, however, that people with MS should have the opportunity to protect their future by maintaining insurance benefits and, when possible, choose jobs that offer insurance plans that do not exclude pre-existing conditions. Employee rights and employer responsibilities, which vary regionally, should also be discussed. In addition to the high costs of unemployment, there are other substantial economic consequences. These costs may include health care, medications, alternative therapies, equipment, home and automobile adaptations, personal care, home care, and long-term care. Other expenses, such as child care, transportation, recreation, travel, housekeeping, and home maintenance, may be greater for those with MS because of increased need or specialized service requirements. People with MS are also susceptible to financial losses caused by the purchase of “miracle treatments” for MS. The availability of insurance and national health and social support systems generally determine which costs are born by the patient, by third-party payers, and by the public sector. Most costs, however, increase with disability.13–16 Patients should be informed of the types of expenses they may incur so they can plan their finances accordingly.
RELATIONSHIP ISSUES Illness of any kind is hard on relationships, but chronic disabling illness is even harder. Because more 75 percent of people with MS are married,31 marital issues commonly need to be addressed. The stress MS places on these relationships goes beyond socioeconomic issues. Early in the disease, partners face disease uncertainty and an unpredictable need for their assistance and emotional support. They may need to make adjustments for social and family events and take on new tasks and responsibilities. Couples and individuals must grieve their losses, worry about their uncertain future, and reconsider all the plans they have made. Whereas partners often fear the loss of their spouse as they’ve always known them, patients commonly fear abandonment. Caregiver strain is therefore high, even early in the disease in the absence of significant disability.32–34 As disability increases and fewer tasks and responsibilities can be managed, roles change. A partner and lover takes on more of a caregiver role, and the person with MS must learn to accept care. Anger and guilt are common reactions. Sexuality may become more of an issue, resulting from both biological and psychological components. The hardest issues for a caregiver to deal with, however, are usually cognitive, personality, and behavior changes. These changes usually occur fairly late in disease, and many patients never reach that stage. Changes, adaptations, and strains have considerable psychological impact on both patients and caregivers. Divorce and separation rates increase with disability.31–35 Preventive strategies may be beneficial in maintaining healthy marriages. Optimizing medical management, expressing support for the challenges they face, encouraging caregivers to avoid burnout, and offering contact information
334 Multiple Sclerosis 2 for patients and partners to investigate potential support may be helpful. Counseling may also be necessary. People with MS also have a decreased chance of ever marrying, especially if they are young or have greater disability. Disability or anticipated disability also alters self-perception, sexuality, and the perceptions of others, which affects dating, even in those without disability. Also, persons with MS must decide when to disclose their diagnosis. Other relationships may also be affected. Parents may resume a caregiver role, even when they are not needed as caregivers. They often become more involved in the life of their affected grown child than is welcome. This can increase marital stress. Children most commonly worry about whether their parents will be able to continue caring for them, a fear often shared by parents. Children who are unaware of the diagnosis often notice increased worry and stress in the house. This is usually more frightening than the truth. Although parents with MS may be unable to participate in some of their children’s activities because of inaccessibility or fatigue, it is the emotional effects of the disease that bother children the most. If parents are unable to care for their children, paid child care may be necessary. The psychological impact of this loss may require counseling. MS may also effect decisions regarding family size. Some people decide to have no children, or fewer children, because they fear they will be unable to care for them. Sometimes spouses fear they will be left caring for both children and a disabled partner. Other patients worry that raising children will adversely affect their own health. Some people with MS do not have children because of fears about hereditary factors, and some women do not want to discontinue MS therapies to permit pregnancy. These issues may have a different psychological impact on men and women and on marriages. Physicians should discuss the effect of pregnancy on MS, potential management of the increased postpartum attack risk, and how to manage discontinuation of MS therapy (see Chapter 17). The genetic risks should also be discussed or referral made to a clinical geneticist or genetic counselor. This information will ensure that patients are making decisions based on adequate and accurate information.
HOME AND COMMUNITY ISSUES MS disability is associated with an increased chance of living alone, and severe disability often requires institutional care. Continued care in the home, surrounded by family members, is in large part dependent on financial resources, insurance, and the ability of family members to be involved in ongoing care needs. The quality of institutional care is also largely dependent on these factors. Early planning and avoidance of caregiver burnout can be important. Respite care, including day programs, and allowing others to help can reduce caregiver strain. Neurological disability also results in impaired access within the home and to nearly every aspect of community life. Poor accessibility in the home can
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result in increased risk of injury, need for equipment or costly home alterations, isolation, dependency, loss of role function, and even the need to move to a new home or neighborhood. Mobility outside the home is usually more restricted and less controllable. Transportation problems, building accessibility, and lack of adequate restrooms contribute to this handicap.36 Automobile alterations may be required even if the impaired individual is no longer driving. Public transportation for disabled people is often inconvenient, inadequate, or simply nonexistent. Employment opportunities may be decreased as a result of lack of transportation or lack of an accessible work environment. Shopping, mailing a letter, or getting a haircut may become major ordeals, and leisure and travel opportunities are decreased. Even access to health care may be affected. These issues often lead to increased cost, loss of independence, and social isolation. The psychological consequence of losing the ability to drive is usually significant. Patients are often angry or in denial. This may result in unsafe, and often illegal, continuation of driving. Although use of hand controls may prolong independence, a driving assessment may be helpful in assessing their appropriateness and may provide information on ways to obtain them and fund their installation. Because most people with MS eventually acquire disability, all should be advised of their future mobility risks early in the course of the disease. They can then consider the impact of impaired mobility when making decisions such as job retraining, the type of home to purchase, or the timing of a dream vacation. Community resources may be important in providing patients with practical information about mobility issues in their community. Money and good social support can significantly decrease the impact of poor accessibility.
HEALTH AND LIFESTYLE ISSUES From the time of their initial diagnosis, patients are usually interested in learning about potentially beneficial lifestyle changes. Although there is currently no diet or supplement known to affect MS outcomes, attention to general health maintenance is important. This includes regular exercise, adequate nutrition, and attention to preventive health issues. Adequate fiber and hydration should also be encouraged. Bladder dysfunction leads many with MS to decrease their fluid intake, but dehydration increases fatigue. Unfortunately, because of a lack of time and energy, disability, poor economic status, child care responsibilities, and inadequate social support to meet their increased needs, people with MS are often not able to attend to these issues, even very early in their disease. Lack of exercise is particularly common. Lack of appropriate fitness facilities and few fitness consultants adequately trained to handle the issues faced by those with MS makes fitness even harder to maintain in those with disability. Many MS Society chapters, however, run exercise programs for those with disabilities. Patients should be advised of these issues and supported in their need to reduce other activities, including employment, to maintain their wellness. Evidence that caregiver health, HRQL, and tendency
336 Multiple Sclerosis 2 to exercise are also reduced6,32,33 suggests that caregivers should receive the same advice. Health maintenance also includes appropriate health screening. Need varies according to gender, age, and other health risks, but screening is often neglected by people with disabilities. People with MS may not be capable of transferring to examination tables, spasticity may make examination difficult, or they may simply have so many other issues to deal with that screening is not seen as important enough. Men are less likely to have a primary care provider12 to help them manage their general health needs, and many patients and physicians focus on MS and neglect other health issues. All patients with disability should be reminded that they still require regular health screening. People with disabilities are more likely to be victims of violence. They have fewer opportunities to escape domestic violence and less ability to defend themselves. Because women are most often the victims of violence, these issues are more likely to affect them. Disability may also increase a person’s fear of losing access to their children in marital breakup. The risk of injury caused by falls is also increased. The risk of falls can often be reduced by the use of adequate walking aids and equipment. However, they may be unaffordable (lifts for transfer) or psychologically unacceptable to patients. Some patients prefer the risk of injury to carrying a cane. Use of alternative therapies may also pose a health risk, especially when many are being combined. To many people, their use gives them a sense of control over their disease, often without recognizing there could be risk. People with MS may also lose their ability to continue their hobbies and interests. Participating in or attending sporting or cultural activities may become increasingly difficult. This forces patients to be increasingly sedentary and passive and may increase social isolation. In addition to a high occurrence of psychiatric symptoms and disorders, MS often impairs perception of mental health and emotional roles.3–7,37 These consequences have been measured using the mental health domains of HRQL assessment tools. Common mental health issues include depression, anxiety, adjustment disorders, grief reactions, emotional stress, worry, fear, hopelessness, helplessness, dependency, loss of self-esteem, and loss of control and independence. Many are related to the psychosocial consequences of the disease. Although depression and anxiety often require drug treatment, time for adjustment, education about the disease, inclusion of patients in decision-making processes, and counseling often help patients deal with most of the other issues. Support groups may be helpful and can usually be accessed through local MS societies. Eventually, paid caregivers may be required to meet personal care needs. This may make patients feel abandoned but at the same time feel guilty for feeling that way. The presence of paid caregivers can be both relieving and intrusive, and the relationships that develop between caregivers and patients can be supportive or foster dependency. When 24-hour care is needed, it is often necessary for patients to live in an institution. This may lead to further dependency but can also improve socialization. The psychological impact of these changes is often tremendous for patients and their families. Early planning can increase the care options available, so it is important to be realistic when advising disabled, progressive patients about their prognosis.
The Psychosocial Consequences of Multiple Sclerosis Table 21.2
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Psychosocial Management: Issues to Address at Each Disease Stage
Newly Diagnosed
Early MS
Later MS: Disabling Disease
General MS information Information about MS and its impact Resource list Community support Lifestyle issues Diet Exercise Risks Disclosure of diagnosis Insurance issues
Role changes Family well-being Mental health Relationships Spousal, children, other Pregnancy Diet and exercise Risks Employment Education and retraining Economic Accessibility Alternative therapies False hopes
Employment Insurance Economics Relationships Living arrangements Transportation Accessibility Diet and exercise Hobbies, interests, and socialization Mental health Personal care needs Risks Health screening Safety: driving and falls
MANAGEMENT STRATEGIES A strategy to approach psychosocial issues can usually be built around the stages of the disease: newly diagnosed, early MS without disability, and MS with disability. At each stage, patients face different problems and different risks need to be addressed to potentially reduce their impact. Table 21.2 lists the issues that should be addressed at each disease stage. Addressing these issues may validate patients’ concerns about common problems or inform them of issues they should address on their own. Sometimes, however, patients should be directed or referred to other sources of information and support. This ensures that they have access to general information and allows them to retain a sense of control. Information and support for most issues related to living with MS can be obtained from national MS societies. These organizations may be the most important partner a physician can have in caring for people with MS.
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