Outlook on Life

The purpose of this study was to examine the contribution of demographic, medical, and social support variables in predicting the mental health dimension of quality of life (MHD/ QOL) among people with multiple sclerosis (MS). Eighty-two participants of employment age recruited from hospital neurology clinics specializing in MS completed a demographic questionnaire, and 69 completed the Multiple Sclerosis Quality of Life Inventory (MSQLI). In addition, a neurologist used the Expanded Disability Status Scale (EDSS) to assess the medical status of each participant. The number of young children in the family, MS duration, cognitive impairment, and social support were predictors of MHD/QOL. Employment was not associated with MHD/QOL score. Social support made a significant and unique contribution to the MHD/QOL beyond all the other variables. Implications for social work practice are presented.

KEY WORDS: employment; multiple sclerosis; quality of life; social support; social worker

Multiple sclerosis (MS) is a chronic neurological disorder affecting young adults. Characteristically, MS strikes between the ages of 20 and 40 and affects approximately 1 million adults, mostly women, worldwide (Rudick, Cohen,Weinstock-Guttman, Kinkel, & Ransohoff, 1997) .The cause is unknown, although it is considered to be an autoimmune disease (SchiafHno, Shawaryn, & Blum, 1996). MS is outstanding in its wide range of symptoms and unpredictable disease course, including a benign course, a relapsing-remitting course (exacerbations and remissions), which invariably turns into a secondary progressive course, and a type that is progressive from its onset. There have been several advances in recent years. Preventive drug therapies that delay progression of the disease have been approved for use by the Food and Drug Administration (FDA) and are used worldwide (Rudick et al.). The disease can cause serious disabilities resulting in a detrimental effect on the individual's quality of life (QOL).The tasks and roles of education, career choice and planning, employment, marriage, childbearing and child rearing, living arrangements, and housing investments may be seriously affected.

There is no known cure, and the main goal of treatment is to delay progression, relieve symptoms, and optimize QOL. Social workers meet people with MS as their clients in numerous settings during the course of the disease: hospitals and ambulatory clinics, local social services offices, rehabilitation centers, or in workplaces.A major role of those social workers is to help their clients improve their QOL.

QOL has been defined as subjective satisfaction with life (Phennings, Polman, & Van der Ploeg, 1995). The concept of QOL has received much attention, as traditionally used measures of medical outcome such as morbidity and mortality do not sufficiently capture the full impact of medical interventions.This is especially the case for chronic diseases such as MS. It is necessary to understand the multidimensional impact of chronic diseases such as MS through consideration of physical and social functioning and emotional well- being (Nicholl, Lincoln, Francis, & Stephan, 2001). In MS, physical symptoms or neurological impairment were traditionally the main characteristics used to analyze the severity of the disease. In recent years, QOL has been used along with scales that measure the severity of MS (for example, the Expanded Disability Status Scale [EDSS] developed by Kurtzke in 1983) as a partner for measuring the subjective and functional effects of the neurological impairments, the disability, and handicap aspects. Most researchers agree that QOL must be measured by self-administration rather than by proxies (for example, caretakers, doctors, nurses, or relatives), given that it is a subjective perception influenced by the individual's values and norms (Phennings, Cohen, & Van der Ploeg, 1997; Schwartz, Vollmer, Lee, & the North American Research Consortium on Multiple Sclerosis Outcomes Study Group, 1999).

The subjective aspect of QOL is a"person's sense of well-being" (Cella et al, 1996), defined operationally as the mental health dimension of QOL (MHD/QOL). How demographic and medical characteristics of a person with MS and the level of his or her perceived social support predict MHD/ QOL is the question of this study.

Previous studies indicated education, family status, and employment as demographic characteristics related to QOL. Education was found to be a source of individual well-being by influencing opportunities for and type of employment, income, social psychological resources, and distress (Ross & Van Willigen, 1997). Being employed and living with a spouse were found to be main contributors to a better QOL (Gulick, 1997; Koch, Rumrill, Roessler, & Fitzgerald, 2001). People with MS who were employed were more satisfied with their lives than those who were unemployed because of the instrumental and intrinsic values associated with work (Gulick, 1997).

Social support is defined as some type of positive interaction or helpful behavior provided to a person in need of support (Hupcey, 1998).Tilden (1985) presented a four-part definition of social support: (1) emotional support (esteem, affect, trust, concern, listening), (2) appraisal support (affirmation, feedback,social comparison), (3) informational support (advice suggestion, directives, information), and (4) instrumental support (aid in kind, money, labor, time, modifying environment).The Medical Outcomes Study Modified Social Support Survey (Sherbourne & Stewart, 1991) used in this study for measuring social support includes these four factors. A review of the literature revealed that social support related to positive outcomes such as an individual's health and well- being or to an increase in an individual's adaptive capacity to deal with stress and illness (Foote, Piazza, Holcombe, Paul, & Baffin, 1990; Helgeson, 2003; Schreurs & Ridder, 1997;Thoits, 1995).

Social support was found to be an important factor that helped people with MS cope with their diagnosis and symptoms (Miller, 1997; Wurgaft, 1999). Social support was found in many studies to be a buffering or an intervening variable for stressful life events (Brandt & Weinert, 1981 ; Foote et al., 1990;Thoits, 1995).

In a multidisciplinary medical team working with people with MS, a major role of the social worker is to help other members of the team better understand what might improve their clients' QOL. Nevertheless, our literature review revealed lack of research done by social workers or literature written by social workers on this issue: Two articles were found in the ERL WebSPIRS 5 databases between 1991 and 2003 (see Long & Miller, 1991; Speziale, 1997). Clearly,more studies in the field are needed. The aim of this study was to examine the contribution of demographic, medical, and social support variables in predicting the MHD/QOL among people with MS.

METHOD

Participants

Eighty-five consecutive clinic-attending patients were recruited from two clinics in Israel during 2001. Both clinics specialize in MS and have a longtime experience with clinical trials for drugs such as glatiramer acetate (Copaxone) and interferon β (betaferon). Inclusion criteria included clinically definite MS diagnosis for at least one year; at least three months since the last relapse; cognitive ability to complete the questionnaire; and being of employment age: for men, 18 to 65, and for women, 18 to 60. All individuals meeting the inclusion requirements were approached. Only three patients refused to participate in the study (one had participated in many studies and was tired of filling out forms, two others evaded the issue).

The sample included a cross-section of people with MS representing different demographic characteristics, types of disease course, severity and duration, and different preventive drug therapies (see Table 1).The majority of the participants were Jewish (94 percent), women (79 percent),in their midforties, living with a partner (74 percent), and highly educated (46 percent -with academic degrees). Sixty-one percent were employed, 63 percent were born in Israel, and 37 percent were immigrants (32 percent from European and North American countries, and 5 percent from Asia and Africa). Medically, they were characterized by a relapsing-remitting disease course (73 percent) and mean illness duration of 8.5 years. Fifty- five percent suffered from moderate disability, 37 percent from mild disability, and only 8 percent from severe impairment. The majority of the participants (78 percent) were on long-standing treatment with MS preventive drug therapy for relapsing-remitting disease course. Despite the nonprobability sampling, the participants in this study were found to be similar to the general MS population in Israel.An Israeli countrywide study done by Wurgaft (1999) on 81 patients receiving Copaxone therapy reported similar demographic characteristics (75.3 percent females, average age 44 years, 75 percent married or living with a partner), and similar medical characteristics (EDSS average 2.9 [SD = 1.9]). Like all Israelis, people with MS have fullhealth insurance coverage that includes MS preventive drug therapy. In Israel, the trials of two of the drug therapies were open, and all patients who met the inclusion criteria (suffering from relapsing-remitting disease course) were offered the treatment. Consequently, this profile is likely to be representative of the Israeli MS population and of the world population after the mid-1990s who receive the preventive drug therapy. In addition, nearly all MS patients in Israel are in contact with an ambulatory clinic at least annually or semiannually.

Instruments

Demographic and Medical Questionnaire:This questionnaire includes two sections:

1. The sociodemographic section includes data on age, gender, marital status, number of children, number of young children, education, country of origin, and relevant employment information. The participant's employment status was categorized as 1 = employed at the same job as before the diagnosis, 2 = employed differently than before the onset of MS (changes in profession, job description, place of work, or hours), and 3 = not working.

Table 1: Demographic and Medical Characteristics of Participants (N = 82)

2. The medical section includes data about length of illness (measured in years since the diagnosis), type of disease course (relapsing remitting, primary progressive, secondary progressive, or benign), and type and length of preventive drug therapy.

Expanded Disability Status Scale (EDSS) (Kurtzke, 1983).This is the most widely used scale to assess functioning of MS patients. The scale is completed by a neurologist after a clinical examination and measures neurological impairment.The overall EDSS score ranges from 0 (normal) to 10 on a 20-step ordinal scale. An overall EDSS score of 0 represents normal functioning, scores of up to 3 or 4 represent mild disability usually with no disturbance of normal activities of daily living (ADL) or work, including walking 300 meters without rest or assistance. Scores of 5 to 6 represent some impairment in activities, including work, and gradually more aid needed for walking (cane, braces or crutches, or another person). Scores of 7 to 9 refer to patients that are wheelchair bound or bedridden, with gradually more aid needed for ADL, and 10 is death due to MS, including complications of being bedridden.

Multiple Sclerosis Quality of Life Inventory (MSQLI) (Ritvo et al, 1997).This questionnaire was developed and tested by the Consortium of Multiple Sclerosis Centers Health Services Research Subcommittee and funded by the National Multiple Sclerosis Society. The MSQLI consists of the following:

* SF-36 (36-item short form) of the Medical Outcomes Study-This form is a widely used generic health-related QOL measure that is also the most commonly used generic measure in MS (Phennings.Van der Ploeg, Cohen, & Polman, 1999). For this study we used five items from the SF-36. One item measured pain: "How much bodily pain have you had during the past 4 weeks?" (from 1 = not at all, to 6 = to an extreme degree), and four items measured general health: "In general, would you say your health is" (from 1 = excellent to 5 = poor). The SF-36 was translated into Hebrew and validated in previous studies (LewinEpstein, Sagiv-Schifter, Shabtai, & Shmueli, 1998).

* Nine symptom-specific scales-These scales encompass the variety of symptomatology and resulting disabilities and handicaps that may be caused by MS (Fischer et al., 1999; Ritvo et al., 1997). For this study, only six scales were used (some modified for this study), measuring pain, fatigue, perceived cognitive function, general health assessment, social support, and mental health functioning (seeTable 2).The mental health scale was used to measure the MHD/ QOL.This scale measures anxiety, depression, behavioral control, and positive affect. It includes 18 items (for example, "During the past 4 weeks, how much of the time did you feel depressed?" ranging from 1 = all of the time to 6 = none of the time). All the scales were translated into Hebrew and validated by face validity for this study.

Procedure

The Institutional Review Board of both hospitals approved the study. A written and verbal explanation was provided to participants about the purpose of the study before the informed consent form was signed. Participants were informed that their refusal to participate in the study would not affect their treatment at the clinic. The study was conducted during each patients scheduled check-up at the hospital clinic during 2001 .The demographic questionnaire and the MSQLI were filled out at the clinic.The neurologist assessed the EDSS score on the day that the questionnaires were completed by the participants.

RESULTS

Self-Reported Quality of Life/Mental Health Dimension

The results are based on 69 participants who completed the MSQLI questionnaire/The MHD/QOL total score was normally distributed across the sample (Table 3).The participants in this study reported a high level of mental health. As the relatively high scores demonstrate, this population felt in control of their behavior, thoughts, and emotions and did not seem to be suffering from serious depression or anxiety. Despite the above-average morale, the participants did not characterize themselves as happy or cheerful.

Table 2: MSQLI Scales Used in this Study

Demographic and Medical Characteristics and Social Support as Predictors for MHD/QOL

How far can demographic and medical characteristics and social support predict the mental health of people with MS? With a normally distributed dependent variable for mental health (MHD/QOL), a hierarchical regression strategy was used to examine the contribution of each of three blocks of variables to participants' MHD/QOL: (1) demographic characteristics, (2) medical characteristics (objective and subjective), and (3) social support. Table 4 presents the significant correlation coefficients of the variables used in the regression.

Participants' gender, age, marital status, number of children in the family, and years of education were unrelated to MHD/QOL.The only demographic characteristic associated with MHD/QOL was the number of young children under age 21 in the family. Participants with fewer young children reported a significantly higher MHD/QOL than those with more young children. An important finding is that employment status was not associated with the MHD/QOL score. Participants who were employed did not report a significantly higher level of MHD/QOL than those who were not employed.

One objective medical characteristic, MS duration, and all subjective medical characteristics were significantly associated with MHD/QOL. Participants with longer duration of disease reported higher MHD/QOL than those who reported less fatigue, less pain, less cognitive impairment, and better general health. No significant correlation was found between the EDSS score (severity of disability) and MHD/QOL.

Table 3: Mean Item Scores on Mental Health Inventory (N = 69)

A strong positive correlation was found between social support and MHD/QOL.The more perceived social support, the higher MHD/QOL reported.

Table 5 presents the results of the linear hierarchical regression analysis in which the dependent variable was the total score in MHD/QOL. The demographic and medical characteristics that were significantly correlated with MHD/QOL and social support were set as predictors in this analysis. By controlling for demographic and medical characteristics, the hierarchical regression generated a measure of the contribution of social support. To ensure that the differences associated with demographic and medical characteristics were held constant during the subsequent analysis of social support, demographic characteristics were entered at step 1, medical characteristics at step 2, and social support at step 3.The regression model explained 56 percent of the variance in MHD/QOL [F(8, 82) = 9.55,ρ < .001].The significant predictors of MHD/ QOL were the number of children under age 21, MS duration, cognitive impairment, and social support (Table 5). Participants who had fewer young children in the family, participants with a longer MS duration, with less cognitive impairment and who perceived having more social support reported higher MHD/QOL. Social support made a major significant contribution to the MHD/QOL, beyond all of the other variables.

In view of the unique contribution of social support to explaining MHD/QOL, it is important to note that significant negative correlations were found between social support and all of the subjective medical variables: pain, fatigue, cognitive functioning, and general health assessment ( seeTable 4). The more social support the individual perceived, the less pain suffered, the less cognitive impairment, the less fatigue suffered, and the better he or she assessed general health.

DISCUSSION

Despite the fact that this was a study of Israeli patients, the results are relevant in an international context. First, the profile of the participants in this study is likely to be representative of the world population after the mid-1990s among people with MS who receive the preventive drug therapy in terms of demographic characteristics and duration of MS (Koch et al., 2001; Nortvedt, Riise, Myhr, & Nyland, 1999; O'Day, 1998; Phennings,Van der Ploeg, et al., 1999). Second, the study relates to an issue of prime importance to social workers in many countries-what might improve QOL of people with MS.

Table 4: Significant Correlation Coefficients between Demographic and Medical Variables, Social Support, and MHD/QOL (N = 69)

The people with MS who participated in this study reported a high level of MHD/QOL.They felt in control of their behavior, thoughts, and emotions and did not seem to be suffering from serious depression or anxiety. Despite above-average morale, the participants did not characterize themselves as happy or cheerful. One possible explanat\ion for this finding might be that the participants in this study represent a new generation of people with MS. The majority of them were on longstanding treatment with preventive drugs. The existence of therapy for a disease that was previously considered unpredictably degenerative with no treatment is encouraging. Some of these people, who were diagnosed during this new optimistic era, were told of the diagnosis along with the possibility of treatment.They were also encouraged to continue with life and employment and to have families. As people with MS are expected to function with less disability for a longer time due to the medication, the question of what contributes to their QOL is important.

A mixture of demographic and medical characteristics and social support predicted the MHD/ QOL.The number of young children in the family was the only demographic characteristic that had a significant contribution to the level of mental health. Living with more young children was associated with lower level of mental health. The majority of the participants in this study were women, and previous studies have shown that homemaking and parenting roles among women with MS who had young children are associated with high levels of stress and therefore a lower level of mental health (Gulick, 1996).

Among the medical characteristics measured in this study, only MS duration and cognitive impairment had a significant contribution to the total score of MHD/QOL. Participants with a longer MS duration expressed a higher level of mental health. In contrast to previous findings (Phennings, Cohen, et al., 1999), longer time since diagnosis did not have a negative impact on quality of life. The explanation for this finding might be adjustment to the disease. As Ford and colleagues (2001) explained, better QOL might reflect a longer disease duration and adjustment. Adjustment is often a function of disease duration, even in MS, in which adjustment is a constant process due to exacerbation and remissions and general increase in disability.

Table 5: Summary of Linear Hierarchical Regression Analysis for Variables Predicting MHD/QOL (N = 69)

Cognitive dysfunction in MS is characterized by impairment of memory, attention, information processing, and executive function. Cognitive dysfunction is a major factor in determining low QOL among people with MS (Rao et al., 1991), thus corroborating the results of the present study in which less cognitive dysfunction was correlated with a higher level of MHD/QOL.

Social support in this study had a significant contribution to the total score of MHD/QOL. People with MS who perceived having more social support reported a higher level of mental health. In previous studies as well, more social support was found to contribute to better mental health.Wurgaft (1999) found greater spousal support to be associated with lower emotional distress in the Copaxone study trial. Miller (1997) indicated that people with MS who participated in supportive interactions had more of a sense of purpose to their lives and experienced less depression. Foote and colleagues (1990) found that patients with a higher level of hope perceived greater social support and suggested that without supportive relationships people may view themselves more negatively and have less hope for the future. An important source of social support is health care professionals, who are a source of information, knowledge, and encouragement (Miller). The participants in this study were in regular contact with the MS clinic (every three months), which offered 24-hour phone access, and with the pharmaceutical company's nurse.This situation provided opportunities for receiving a lot of support from health care professionals. Wurgaft found that the better the patient assessed his relationship with the pharmaceutical company's nurse, the lower his or her emotional distress, which is related to better QOL.

The results of this study seemed to negate the finding that unemployment has a negative impact on the mental health of people with MS (Larsen, 1990). Employment was not a significant predictor of the level of mental health. A similar finding was found in a study of Israeli patients on Copaxone therapy (Wurgaft, 1999). In the present study, being employed was not associated with more social support. Being in the workforce might give people with MS more opportunities for social support (Battaglia & Uccelli, 1997), but the participants in this study used other sources of social support.

Western society places a high value on work, and people outside the workforce because of handicap or disability may feel hurt and inferior. Thus, one vocational rehabilitation goal is to return or reintegrate people into the workforce, and the fulfillment of that goal is considered social success and a measure of an enlightened society (Pain, Dunn, Anderson, Darrah, & Kratochvil, 1998). Perhaps the importance of work is overestimated and judged by proxy and not by patients. In a study that compared QOL by cardiovascular patients with health care professionals, staff ranked the importance of employment status much higher than did the patients or family members (Woodend, Nair, &Tang, 1997). In a study of employment and QOL among graduates of a school for people who are blind and visually impaired, high levels of QOL were reported by unemployed participants (DeLaGarza & Erin, 1993).Ville and Ravaud (1996) reviewed the inconsistent literature of factors related to return to work after experiencing a handicap and indicated that employment is not a significant predictor of satisfaction with life. Ville and Ravaud indicated that not having a job can be satisfying and a legitimate possibility. The authors suggested encouraging this possibility and the recognition that a person can have a meaningful life without working. Modern technology, such as the Internet, may help an unemployed disabled person remain in constant contact with others and obtain some of the strengths necessary for mental health.

Study Limitations

Our study had several limitations; therefore, caution is needed regarding generalization of the findings. First, the findings are based on a small purposive sample of participants who represented a new generation of MS patients-the majority on longstanding treatment with preventive medications and characterized by a relapsing- remitting disease. However, because the drug treatment is now widespread the sample represents people diagnosed with MS since the mid-1990s (the therapies were approved by the FDA only in the mid- 1990s). A similar study on a larger sample that may be more representative of the entire population of people with MS is needed to draw clear conclusions regarding predictors of MHD/QOL.

Second, the medical information might be biased because it -was self-reported; although, some of the medical characteristics such as MS duration or the disease course were compared with the information in the patient's medical file. Last, the present study did not examine personality characteristics such as self-esteem, coping mechanisms, or locus of control, which may be related to the level of MHD/ QOL.

IMPLICATIONS FOR SOCIAL WORK PRACTICE

The findings of this study have practical implications for social workers working with people with MS.The findings identified a group of MS patients owho have a higher risk of suffering from a lower quality of life and therefore need more social worker's attention. This group includes more recently diagnosed patients, people with more young children at home, those who report more cognitive impairment, and those who have a low level of social support. Workshops for newly diagnosed people with MS conducted by social workers can be useful for finding resources for social support. These workshops can provide information and a place for participants to share experiences, connect participants with other patients, and facilitate communication with the MS clinic staff.

In this study, unemployed people with MS did not report a lower level of QOL. This finding emphasizes the social workers role in understanding the subjective perception of the importance of work in an individual's life. Although work should be a right for all, social workers can question whether it should be an objective to be obtained at any price. Failure to recognize the right of people with MS to work is a form of alienation, as is the imposition of work as an objective for all patients. Finally, many people erroneously associate MS with an ultimate end in a wheel chair and early death and do not distinguish between muscular dystrophy, fatal neurological diseases, and MS. Social workers can change misconceptions about MS by educating the public about what MS is and what it is not. More studies are needed to improve understanding of the QOL of people with MS. Longitudinal studies would be useful in tracking QOL along the course of the disease.

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Chaya Schtvartz, PhD, is a senior teacher, School of Social Work, Bar-Ilan University, Ramat-Gan, 52900, Israel; e-mail: schwartz@mail.biu.ac.il. Rena Frohner, MA, is a social worker, Neurology Department and Multiple Sclerosis Clinic, Department of Social Work and Department of Neurology, Sapir Medical Center-Meir General Hospital, Kfar Saba, Israel. This study was supported in part by a grant from the Department of Research, Planning and Training of the Israeli Ministry of Labor and Welfare. Correspondence concerning this article should be sent to Dr. Chaya Schwartz.

Original manuscript received March 31, 2003

Final revision received August 20, 2003

Accepted September 22, 2003

Copyright National Association of Social Workers, Incorporated Aug 2005

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At the start, all participants indicated a depressive level of 19 (anything above 13 is considered mild to moderate). The group as a whole dropped to a level of 11 after watching the comedy videos, with a 42 per cent reduction in symptoms.

A second group of researchers looked at skin reactions triggered by allergies.

The patients were asked to stop taking allergy medication for 3 days prior to the trials, which involved them watching a Charlie Chaplin film. Before, during and after the film, patients were exposed to various allergens pricked onto their skin. The same procedure was then used whilst patients watched a tape of weather reports.

The allergic rashes and weals were significantly reduced after viewing the comedy tapes whereas they were as bad as ever after watching the weather video.

Doctors are still unsure as to why a good laugh boosts health but believe that the effect of releasing endorphins boosts the body's immune system.

Ref: Daily Mail

Most people (77.9%) who participated report that humor has had beneficial effects. The three most frequently reported benefits of humor, in order, are decreased stress (88.3%), decreased depression (74.9%), and improved relationships (65.9%).

Other benefits included increased hope (41.4%), increased sense of control (36.0%), improved independence (31.1%), decreased pain (20.2%), and decreased fatigue (18.8%).

Relatively few (7.6%) thought that humor produced undesirable effects in their lives. Of that small group, the most frequently reported problem was related to hiding emotions behind humor (63.9%). Most people who responded do not seek humor out as a strategy for controlling MS (83.9%). Many (47.1%), however, report seeking out humor for other reasons.

This survey was carried out by MS-CAM (MS Complimentary & Alternative Medicine Centre).