Quality of life and experience with the national multiple sclerosis society strategic plan priorities for people with multiple sclerosis: Findings from a path analysis

Article type: Research Article

Authors: Li, Jian^{a; *} | Bishop, Malachy^b | Fraser, Robert^c | Rumrill, Phillip D.^d | LaRocca, Nicholas^e | Burns, Maura^f | Lee, Deborah^b | Bhattarai, Muna^b

Affiliations: [a] Kent State University, Kent, OH, USA | [b] University of Wisconsin-Madison, Madison, WI, USA | [c] University of Washington, Seattle, WA, USA | [d] University of Kentucky, Lexington, KY, USA | [e] National Multiple Sclerosis Society, New York, NY, USA | [f] National Multiple Sclerosis Society, New York, NY, USA

Correspondence: [*] Address for correspondence: Jian Li, School of Foundations, Leadership and Administration, Kent State University, White Hall 316, P.O. Box 5190, Kent, OH 44242, USA. Tel.: +1 330 672 0577; E-mail: [email protected].

Abstract: BACKGROUND: The National Multiple Sclerosis Society (NMSS) strives to ensure that people affected by multiple sclerosis (MS) can live their best lives. This mission is reflected in the Society’s strategic plan, which establishes the roadmap for the Society’s continued commitment to a world free of MS. OBJECTIVE: The purpose of this article is to add to the understanding of both the scope and complexity of the impact of MS and MS-related supports on quality of life (QOL). METHODS: A national sample of people with MS (n = 748) participated in the study by completing validated surveys assessing their QOL, physical and mental health, MS self-efficacy, resilience, participation in NMSS, perceived stress, emotional support, and social roles and activities. A path model was used to examine how the frequently identified MS QOL predictors, including demographic, MS, psychosocial, and physical functional status variables relate to each other and to QOL. RESULTS: The model exhibited reasonable model fit with hypothesized paths being statistically significant and in the hypothesized direction. CONCLUSION: Findings revealed that the relationships among mental health, demographic factors, overall MS experiences, QOL, NMSS participation, and resonance with the mission of the NMSS are complex, highly nuanced, and yet strongly correlated. More importantly, the study highlights the strong influence of variables that are more readily amenable to change through programmatic and clinical intervention, and active self-management and participation.

Keywords: Multiple sclerosis, quality of life, psychosocial status, physical function

DOI: 10.3233/WOR-205038

Journal: Work, vol. 71, no. 4, pp. 987-1005, 2022