Academic journal article Journal of Health and Human Services Administration

Quality of Life in People with Multiple Sclerosis: Data from the Sonya Slifka Longitudinal Multiple Sclerosis Study

Academic journal article Journal of Health and Human Services Administration

Quality of Life in People with Multiple Sclerosis: Data from the Sonya Slifka Longitudinal Multiple Sclerosis Study

Article excerpt

ABSTRACT

Current knowledge about the health-related quality of life (HRQoL) experienced by people with multiple sclerosis (MS) is limited. We compared item and component scale scores on the Medical Outcomes Short Form 12 (SF-12) of 2,109 people with MS to U.S. norms and published data on persons with other medical conditions. We also built regression models for SF-12-derived mental (MCS) and physical component scale (PCS) scores. Seventy-five percent of the sample had been diagnosed with MS for over 5 years, and one-half to two-thirds received help with at least one activity of daily living (ADL) or instrumental activity of daily living (IADL), respectively. The mean PCS score was 36.2 (Standard Error: 0.27), significantly lower by 14 points than the U.S. population norm and by 4-12 points than mean scores for individuals with diabetes, congestive heart failure, myocardial infarction, hypertension or depression. The mean MCS score was 49.2 (Standard Error: 0.25), significantly lower than the norm for the U.S. population and the mean scores for the chronic condition groups except congestive heart failure and depression. We identified several demographic, disease, and health services factors that were significantly related to quality of life and highlighted a number of areas for improvement. We concluded that the quality of the lives of people with MS could be enhanced by removing barriers to MS care, general health care, and mental health care; meeting needs for help with activities of daily living and instrumental activities of daily living; supporting employment; and improving access to disease modifying agents and symptomatic treatments.

INTRODUCTION

There has been growing awareness of the importance of measuring health-related quality of life (HRQoL) in people with Multiple Sclerosis (MS). MS is the most common disabling neurologic condition affecting young people, with an average age of onset at about 33 years. People with MS have a wide range of symptoms and impairments resulting from diffuse pathological changes in their central nervous systems. There is no cure for MS. Although disease modifying agents (DMAs) may help reduce the number of relapses and slow progression, and various medications can mitigate specific symptoms such as spasticity and bladder dysfunction, maximizing functioning and enhancing satisfaction with life are the main goals of MS care.

Traditionally, health care providers determined whether such goals were achieved. Recently, however, providers and researchers have realized that patients are the best judges of their own functioning and most capable of rating their levels of satisfaction: their perceptions of what is ideal should form the basis for such comparisons (Ware, 1995). Therefore, self-reported Health-Related Quality of Life (HRQoL) measures have been used increasingly to quantify the burdens of illness and evaluate the effects of medical interventions.

Considerable interest has focused on HRQoL among people with MS. Nortvedt et al. (2003) found 56 studies published before January 1, 2002 that evaluated quality of life in MS, but only 13 had sample sizes larger than 200. Moreover, results from existing studies are inconsistent, and few are population-based (Myhr et al., 2001; Hemmett, Holmes, Barnes and Russell, 2004; Pittock et al., 2004; Ford, Gerry, Johnson and Tennant, 2001; McPherson et al., 2004; Hakim et al., 2000). Pittock et al. (2004) studied patients with established MS in Olmsted County in Minnesota in 2000 (n=201) and found that mental health scores for people with MS, as measured by the Medical Outcomes Study Short Form-36 (SF-36), were comparable to or even better than the general U.S. population and concluded that "quality of life is favorable for most patients with multiple sclerosis." Pittock's findings and conclusion produced a stir in the research community: several investigators argued that the reported mental health scores were suspect because of the high prevalence of depression in the MS population and that Pittock's conclusion was misleading (Mitchell, Benito-Leon, Rivera-Navarro and Morales-Gonzalez, 2004; Janssens and Hintzen, 2004). …

Search by... Author
Show... All Results Primary Sources Peer-reviewed

Oops!

An unknown error has occurred. Please click the button below to reload the page. If the problem persists, please try again in a little while.