Contribution of Demographic, Medical, and Social Support Variables in Predicting the Mental Health Dimension of Quality of Life among People with Multiple Sclerosis

Beginning of article

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 (Schiaffino, 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, & Daffin, 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 [beta] (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). …