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

Jian Li, Malachy Bishop, Robert Fraser, Phillip D. Rumrill, Nicholas Larocca, Maura Burns, Deborah Lee, Muna Bhattarai

Research output: Contribution to journalArticlepeer-review

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.

Original languageEnglish
Pages (from-to)987-1005
Number of pages19
JournalWork
Volume71
Issue number4
DOIs
StatePublished - 2022

Bibliographical note

Funding Information:
This research was funded through a grant from the National Multiple Sclerosis Society, New York, NY, USA. The authors wish to thank the National Multiple Sclerosis Society and study participants for their support and assistance with this research.

Funding Information:
Physical functional status and mobility data were collected using the Patient Determined Disease Steps (PDDS) Scale, a brief, self-report instrument validated for use with patients with MS with demonstrated validity, reliability, and sensitivity to change over time. The PDDS is a nine-item self-assessment scale of MS disease status developed as a self-report version of the physician-reported Disease Steps originated by Hohol and colleagues [56]. The North American Research Committee on Multiple Sclerosis (NARCOMS) modified the PDDS to expand response options, and currently uses the PDDS in the collection of its registry data [57, 58]. The PDDS is provided for use by the NARCOMS Registry (www.narcoms.org/pdds), which is supported in part by the Consortium of Multiple Sclerosis Centers (CMSC) and the CMSC Foundation. Based on nine descriptive statements of physical functional status and mobility, participants select the statement that best reflects their current status. As a valid and reliable measure of patient-reported function, the PDDS scale has been used extensively since its development in research on such varied aspects of MS and function as spasticity, treatment patterns, pain, fatigue, employment, quality of life, and physical activity [57].

Publisher Copyright:
© 2022 - IOS Press. All rights reserved.

Keywords

  • Multiple sclerosis
  • physical function
  • psychosocial status
  • quality of life

ASJC Scopus subject areas

  • Rehabilitation
  • Public Health, Environmental and Occupational Health

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