Abstract
BackgroundTo improve quality of life (QOL) in patients with multiple sclerosis (MS), it is important to decrease disability and prevent relapse. The aim of this study was to examine the causal and mutual relationships contributing to QOL in Japanese patients with MS, develop path diagrams, and explore interventions with the potential to improve patient QOL.MethodsData of 163 Japanese MS patients were obtained using the Functional Assessment of MS (FAMS) and Nottingham Adjustment Scale-Japanese version (NAS-J) tests, as well as four additional factors that affect QOL (employment status, change of income, availability of disease information, and communication with medical staff). Data were then used in structural equation modeling to develop path diagrams for factors contributing to QOL.ResultsThe Expanded Disability Status Scale (EDSS) score had a significant effect on the total FAMS score. Although EDSS negatively affected the FAMS symptom score, NAS-J subscale scores of anxiety/depression and acceptance were positively related to the FAMS symptom score. Changes in employment status after MS onset negatively affected all NAS-J scores. Knowledge of disease information improved the total NAS-J score, which in turn improved many FAMS subscale scores. Communication with doctors and nurses directly and positively affected some FAMS subscale scores.ConclusionsDisability and change in employment status decrease patient QOL. However, the present findings suggest that other factors, such as acquiring information on MS and communicating with medical staff, can compensate for the worsening of QOL.
Highlights
To improve quality of life (QOL) in patients with multiple sclerosis (MS), it is important to decrease disability and prevent relapse
We previously reported the first evaluation of the entire QOL spectrum in Japanese MS patients by using the Functional Assessment of MS (FAMS), which consists of an MS-specific QOL scale with a self-reported questionnaire and the Nottingham Adjustment Scale-Japanese version (NAS-J), which is a self-reported questionnaire for determining psychological adaptation [4]
Out investigation revealed that FAMS subscale scores for mobility, symptoms, emotional well-being, thinking and fatigue, and additional concerns correlated strongly and negatively with the Expanded Disability Status Scale (EDSS) score, which is a measure of physical disorder in MS patients [4]
Summary
To improve quality of life (QOL) in patients with multiple sclerosis (MS), it is important to decrease disability and prevent relapse. Additional factors affecting QOL (employment status, change of income, availability of disease information, and communication with medical staff )––as identified by MS patients in a focus group interview––were investigated, and the first three factors were found to be important for maintaining the QOL of MS patients [4]. Other studies have reported similar psychosocial and social effects on the QOL of MS patient. These factors include gender [5,6], employment status [7,8], income [9], education [10], and economic burden [11,12]
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