Non-Vocational Health-Related Correlates of Quality of Life for Older Adults Living with Multiple Sclerosis

Abstract

Multiple sclerosis (MS) is one of the most common neurological diseases in the world, affecting an estimated 2.3 million people worldwide, and 450,000 persons in the US (National Multiple Sclerosis Society [NMSS], 2014; Multiple Sclerosis Coalition, 2014). MS is a chronic demyelinating disorder of the central nervous system (CNS), primarily affecting the brain and the spinal cord (Fraser, Kraft, Ehde, & Johnson, 2006). Although the etiology and mechanisms of the disease process are not yet fully understood, MS involves an autoimmune process that results in myelin deterioration and the development of CNS lesions or plaques. The cumulative effect on neural transmission can affect virtually every physical, sensory, mental, and emotional activity (Schapiro, 2003). The broad range of potential MS symptoms includes weakness, spasticity, sensory loss, pain, bladder and bowel problems, sexual dysfunction, cognitive impairment, mood disorders, visual abnormalities, fatigue, and others (Minden, Frankel, Hadden, Srinath, & Perloff, 2004). People with MS have frequently been found to report lower quality of life (QOL) than persons without disabilities 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, Van der Ploeg, Cohen, Bramsen, Polman, & Lankhorst, 1999; Rumrill, Roessler, & Fitzgerald, 2004; Sprangers et al., 2000). As QOL has increasingly become recognized as an important clinical and rehabilitation outcome, understanding the mechanisms by which MS affects QOL and psychosocial well-being has received increased research attention (Bishop, Stenhoff, & Shepard, 2007; Johnson, Amtmann, Yorkston, Klasner, & Kuehn, 2004). This growing body of research has clearly established that the impact of MS on QOL involves a complex interaction of physical, psychological, social, and environmental variables (Bishop, Rumrill, & Roessler, in press; Ghaem & Haghighi, 2008; Goksel et al., 2011; McReynolds & Koch, 2001; Rumrill et al., 2004; Schwartz & Frohner, 2005). Although QOL among persons with MS has received increased research attention in the past 15 years, the experience of older adults with MS has been essentially overlooked in this research. There is, however, good reason to expect that the experience of living with MS changes considerably as people age, and that the psychosocial and disease-related influences of MS on QOL may be experienced differently among older adults. There is a well-established relationship between duration of MS and increased disability (e.g., Minden et al., 2004), such that older Americans with MS can be expected to face more significant physical and cognitive limitations, mobility restrictions, and social isolation than younger adults with a shorter duration of the disease. In a recent national survey of more than 5,000 adults with MS in the United States, persons over the age of 50 were significantly more likely than younger adults to have fallen or been injured, to have been hospitalized related to their MS, to have been referred to an assisted living or long-term care facility, and to have experienced significant cognitive limitations in the prior two years. Further, persons over age 50 were significantly more likely to state that they are limited in their homes because their residence did not meet their accessibility needs (Bishop et al., 2013). As suggested by Minden et al. (2004), the large and rapidly expanding proportion of older adults in the US population includes a growing number of people living with MS. Improved understanding of the impact of QOL on older Americans with MS is, therefore, a critical and urgent matter for health care and human service professionals working with people with MS and their families. Age, MS, and Employment Although MS can occur at any age, initial symptoms are most often evident during early adulthood, typically between the ages of 20 and 40 (Krause, Kern, Horntrich, & Ziemssen, 2013; Schapiro, 2003), when individuals are in the most active phase of career development (Hartung, 2013). …