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.
Benito-León, J., Morales, J.M., Rivera-Navarro, J., & Mitchell, A. (2003). A review about the impact of multiple sclerosis on health-related quality of life.Disability & Rehabilitation,25, 1291–1303.
2.
Bishop, M., Roessler, R., Rumrill, P., Frain, M., Waletich, B., & Umeasiegbu, B. (2013). The relationship between housing accessibility variables and employment status among adults with multiple sclerosis.Journal of Rehabilitation,79(4), 4–14.
3.
Buchanan, R. J., Chakravorty, B. J., Tyry, T., Hatcher, W., & Vollmer, T. (2009). Age-related comparisons of people with multiple sclerosis: Demographic, disease, and treatment characteristics.NeuroRehabilitation,25, 271–278.
4.
Cella, D. F., Dineen, K., Arnason, B., Reder, A., Webster, K. A., … Stefoski, D. (1996). Validation of the Functional Assessment of Multiple Sclerosis quality of life instrument.Neurology, 47(1), 129–139.
5.
Fischer, J. S., LaRocca, N. G., Miller, D. M., Ritvo, P. G., Andrews, H., & Paty, D. (1999). Recent developments in the assessment of quality of life in multiple sclerosis.Multiple Sclerosis,5, 251–259.
6.
Giordano, A., Pucci, E., Naldi, P., Mendozzi, L., Milanese, C., Tronci, F., … Solari, A. (2009). Responsiveness of patient-reported outcome measures in multiple sclerosis relapses: the REMS study.Journal of Neurology, Neurosurgery and Psychiatry,80(9), 1023.
7.
Hawton, A., Green, C., Telford, C.J., Wright, D.E., & Zajicek, J.P. (2012). The use of multiple sclerosis condition-specific measures to inform health policy decision-making: Mapping from the MSWS-12 to the EQ-5D.Multiple Sclerosis Journal,18(6), 853–861.
8.
Hsieh, H. F., & Shannon, S. E. (2005). Three approaches to qualitative content analysis.Qualitative Health Research,15, 1277–1290.
9.
Iezzoni, L. I., & Ngo, L. (2007). Health, disability, and life insurance experiences of working-age persons with multiple sclerosis.Multiple Sclerosis,13, 534–546.
10.
Johnson, K., Bamer, A., & Fraser, R. T. (2009). Disease and demographic characteristics associated with unemployment among working age adults with multiple sclerosis.International Journal of MS Care,11(3), 137–143.
11.
Kalb, R. (2016). Living with multiple sclerosis: The psychosocial challenges for patients and their families. In B.Giesser (Ed.), Primer on multiple sclerosis (2nd ed., pp. 483–498). New York: Oxford University Press.
12.
KerstenP., McLellanD.L., Gross-PajuK., Grigoriadis, N., Bencivenga, R., … ThompsonA.J. (2000) A questionnaire assessment of unmet needs for rehabilitation services and resources for people with multiple sclerosis: Results of a pilot survey in five European countries.Clinical Rehabilitation,14(1), 42–49.
13.
Khurana, V., Sharma, H., Afroz, N., Callan, A., & Medin, J. (2017). Patient-reported outcomes in multiple sclerosis: A systematic comparison of available measures.European Journal of Neurology,24, 1099–1107.
14.
Kuspinar, A., & Mayo, N.E. (2013). Do generic utility measures capture what is important to the quality of life of people with multiple sclerosis?Health and Quality of Life Outcomes, 11, 71.
15.
Lanssmann, H. (2011). Pathophysiology of inflammation and tissue injury in multiple sclerosis: What are the targets for therapy?Journal of the Neurological Sciences, 306 (1–2): 167–169.
16.
Lee, J. M., & DunnJ. (2013). Mobility concerns in multiple sclerosis: Studies and surveys on US patient populations of relevance to nurses.US Neurology,9(1), 17–23.
17.
Marrie, R. A., Horwitz, R., Cutter, G., Tyry, T., Campagnolo, D., & Vollmer, T. (2008). Comorbidity, socioeconomic status and multiple sclerosis.Multiple Sclerosis,14, 1091–1098.
18.
Mattarozzi, K., Casini, F., Baldin, E., Baldini, M., Lugaresi, A., Milani, P., Pietrolongo, E., Gajofatto, A., … D'Alessandro, R., G.E.Ro.N.I.Mu.S. group (2015). Assessing subjective quality of life domains after multiple sclerosis diagnosis disclosure.Health Expectations,19(2), 437–447.
19.
Mayo, N. E., Aburub, A., Brouillette, M. J., Kuspinar, A., Moriello, C., Rodriguez, A. M., & Scott, S. (2017). In support of an individualized approach to assessing quality of life: Comparison between Patient Generated Index and standardized measures across four health conditions.Quality of Life Research,26, 601–609.
20.
Minden, S. L., Frankel, D., Hadden, L., Perloff, J., Srinath, K. P., & Hoaglin, D. C. (2006). The Sonya Slifka Longitudinal Multiple Sclerosis Study: methods and sample characteristics.Multiple Sclerosis,12, 24–38.
21.
Minden, S. L., Frankel, D., Hadden, L. S., & Hoaglin, D. C. (2007). Access to health care for people with MS.Multiple Sclerosis,13, 547–558.
Murray, T. J. (2016). The history of multiple sclerosis: From the age of description to the age of therapy. In B. Giesser (Ed.),?Primer on multiple sclerosis (2nd ed., pp. 3–10). New York, NY: Oxford University Press.
Nissen, S., & Rumrill, P. (2016). Employment and career development considerations. In B.Giesser (Ed.), Primer on multiple sclerosis (2nd ed., pp. 499–514). New York, NY: Oxford University Press.
26.
Nowinski, C. J., Miller, D. M., & Cella, D. (2017). Evolution of patient-reported outcomes and their role in multiple sclerosis clinical trials.Neurotherapeutics,14, 934–944.
27.
Perez, L., Huang, J., Jansky, L., Nowinski, C., Victorson, D., Peterman, A., & Cella, D. (2007). Using focus groups to inform the Neuro-QOL measurement tool: Exploring patient-centered, health-related quality of life concepts across neurological conditions.Journal of Neuroscience Nursing,39(6), 342–353.
28.
Ritvo, P. G., Fischer, J. S., Miller, D. M., Andrews, H., Paty, D. W., & LaRocca, N. G. (1997). Multiple Sclerosis Quality of Life Inventory: A User's Manual. New York, NY: NMSS.
29.
Roessler, R., Rumrill, P., & Fitzgerald, S. (2004). Predictors of employment status for people with multiple sclerosis.Rehabilitation Counseling Bulletin,47(2), 97–103.
30.
Rumrill, P., & Bellini, J. (2018). Research in Rehabilitation Counseling (3rd ed.). Springfield, IL: Charles C. Thomas.
31.
Rumrill, P., Roessler, R., & Fitzgerald, S. (2004). Vocational rehabilitation-related predictors of quality of life among people with multiple sclerosis.Journal of Vocational Rehabilitation,20, 155–163.
32.
Smart, J. (2016). Disability, society, and the individual. Austin, TX: Pro-Ed.
33.
Somerset, M., Sharp, D., & Campbell, R. (2002). Multiple sclerosis and quality of life: A qualitative investigation.Journal of Health Services Research & Policy, 7(3), 151–159.
34.
Vickrey, B. G., Hays, R. D., Harooni, R., Myers, L. W., & Ellison, G. W. (1995) A health-related quality of life measure for multiple sclerosis.Quality of Life Research,4, 187–206.
