Affiliations: [a]
University of Wisconsin-Madison, Madison, WI, USA
| [b]
University of Washington, Seattle, WA, USA
| [c]
Kent State University, Kent, OH, USA
| [d] National Multiple Sclerosis Society, New York, NY, USA
| [e]
Florida Atlantic University-Boca Raton, Boca Raton, FL, USA
| [f]
Virginia Commonwealth University, Richmond, VA, USA
Correspondence:
[*]
Address for correspondence: Malachy Bishop, Ph.D., CRC, Department of Rehabilitation Psychology and Special Education, 409 Education Building, 1000 Bascom Mall, University of Wisconsin-Madison, Madison, WI 53706, USA. E-mail: mlbishop4@wisc.edu.
Abstract: BACKGROUND:Multiple sclerosis (MS) is among the most prevalent chronic neurological conditions worldwide and is associated with a wide range of symptoms and psychosocial impacts. Quality of life (QOL) is recognized as a comprehensive and person-centered framework for exploring and understanding these impacts. Although there is a strong history of including people with MS in the development of health-related and patient-reported outcomes QOL instruments in MS, there have been relatively few large-scale qualitative investigations of what is important to the QOL of people with MS. As part of an ongoing evaluation by the National Multiple Sclerosis Society (NMSS), in which the NMSS is seeking to evaluate the impact of its work on the lives of people living with MS, we surveyed a sample of 748 Americans with MS about the areas of their life that are most important to their QOL. RESULTS:The results suggest that social relationships, health, independence, and participation in meaningful activities, including employment, were among their top priorities. The diversity of life areas identified underscores the importance of understanding the individual’s unique priorities and experiences of QOL, and recognizing the diversity of the population. CONCLUSION:The results are discussed in terms of the implications for understanding of priorities and experiences of Americans living with MS.
Keywords: Multiple sclerosis, quality of life, chronic illness
