Psychosocial Adaptation and Quality of Life in Multiple Sclerosis: Assessment of the Disability Centrality Model (2007)

This article describes an evaluation of the disability centrality model among a sample of persons with multiple sclerosis (MS). The twofold purpose of this research was first to enhance current understanding of the relationship between MS, quality of life (QOL), and psychosocial adaptation, and second, to further assess the validity of this recently proposed model. The disability centrality model (Bishop, 2005a & b) is a multidimensional, quality of life-based model of the mechanisms of impact and adaptive response to chronic illness and acquired disability. Multiple sclerosis (MS) is one of the most common acquired neurological diseases (McNulty, Livneh, & Wilson, 2004), affecting approximately 400,000 people in the United States, or about 1 out of every 750 persons (National Multiple Sclerosis Society [NMSS], 2006), and more than one million people worldwide (Munschauer & Weinstock-Guttman, 2005). Typically diagnosed among people between the ages of 20 and 40 years, MS is the leading cause of neurological disability in early to middle adulthood. Multiple sclerosis is currently thought to be an autoimmune disease that affects the central nervous system. Research related to a comprehensive understanding of the complex neurological processes and systems involved in the MS disease process is rapidly evolving, and although there currently is no cure for MS, a variety of medications and treatments have been identified that can slow its course or alleviate symptoms (NMSS, 2006). Typically presenting with a relapsing-remitting course, after an average of 15 years, most people with MS experience a secondary progressive phase wherein the course becomes either continuously progressive or progresses between exacerbations (Johnson et al., 2006). The various neurochemical processes by which MS affects the central nervous system can result in a broad array of symptoms. The most commonly reported of these include changes in mood and cognitive function, bowel and bladder dysfunction, fatigue, pain, balance problems, difficulties with walking, vision problems, and sexual dysfunction (NMSS, 2006). Because onset is associated with a period of life in which individuals are establishing families, careers, and financial security (King, 2001), MS and its attendant symptoms can create a significant disruption in psychosocial functioning. The illness-related symptoms, medical treatments and their adverse effects, and unpredictable course and prognosis of MS have been associated with a significant impact on quality of life (QOL) and psychosocial adaptation. Multiple Sclerosis, Quality of Life, and Psychosocial Adaptation People with MS have frequently been found to report lower QOL than persons without a disability and, in some studies, lower than persons with other chronic illnesses, including rheumatoid arthritis, epilepsy, and diabetes (Benito-Leon, Morales, Rivera-Navarro, & Mitchell, 2003; Pfennings et al., 1999). Understanding the complex and potentially unique mechanisms by which MS affects QOL and psychosocial well-being is a relatively recent endeavor (Benito-Leon et al., 2003), but one that has received increased attention as QOL has gained prominence as an important measure of treatment efficacy and rehabilitation outcome (Johnson, Amtmann, Yorkston, Klasner, & Kuehn, 2004; Wilson, Goetz, & Stebbins, 1996). Recent studies aimed at delineating the impact of MS on QOL (e.g Benito-Leon et al., 2003; Ford, Gerry, Johnson, & Tennant, 2001; Johnson et al., 2004; Koch, Rumrill, & Roessler, 2001; McReynolds, Koch, & Rumrill, 1999; Miller & Dishon, 2005; Pfennings et al., 1999; Schwartz & Frohner, 2005; Thompson, 1999) have confirmed that this impact results from both the cognitive and physical symptoms of MS, and psychosocial factors. These factors include anxiety associated with the unpredictable course of MS, disruptions or limitations in role functioning, and strain on family relationships and other social support structures (Koch et al; McReynolds et al. …