Abstract
There is increasing interest in patient-centered approaches to chronic disease management and prevention. For people with multiple sclerosis (PwMS), patient empowerment plays a role in improving a range of health-related outcomes. This study aimed to compare health-related quality of life (HRQOL), fatigue, and depression risk between people who have and have not attended a week-long physician-led residential educational retreat or accessed other self-help resources (a book and online content) that foster patient empowerment including the adoption of healthy lifestyle behaviors. PwMS were recruited to the study using online platforms and asked to complete a comprehensive online survey. Data from 2,233 respondents were analysed. Bivariate results indicated that PwMS who had attended a retreat (n = 247), read the associated book (n = 1,167) or regularly visited online sites promoting lifestyle modification (n = 795), had better HRQOL and lower rates of depression and fatigue than those who had not. The depression risk among retreat attendees (8.6 %) was around half that of the whole sample. Regression analysis showed that, controlling for age and gender, compared to the highest level of engagement, no engagement with the resources was associated with nearly threefold higher odds of clinically significant fatigue, tenfold higher odds of depression risk, and physical and mental HRQOL scores 19.5 and 15.6 points lower, respectively. These results are congruent with previously reported post-retreat improvements in HRQOL, and strongly support a role for patient engagement in resources promoting lifestyle modification. Physicians should encourage more active involvement of PwMS in their own health care.Electronic supplementary materialThe online version of this article (doi:10.1007/s10072-015-2089-1) contains supplementary material, which is available to authorized users.
Highlights
Multiple sclerosis (MS) is a chronic inflammatory disorder of the central nervous system often diagnosed in young adults
For people with multiple sclerosis (PwMS), patient empowerment plays a role in improving a range of healthrelated outcomes
This study aimed to compare healthrelated quality of life (HRQOL), fatigue, and depression risk between people who have and have not attended a week-long physician-led residential educational retreat or accessed other self-help resources that foster patient empowerment including the adoption of healthy lifestyle behaviors
Summary
Multiple sclerosis (MS) is a chronic inflammatory disorder of the central nervous system often diagnosed in young adults. In the absence of a known cure, a focus of disease management is on maintaining function and quality of life (QOL). There is growing evidence that lifestyle factors may improve quality of life, reduce relapse rate and slow the progression of the disease [1–6]. Modifying lifestyle and health behaviors requires commitment but the potential benefits in MS, as well as a reduced risk of other chronic lifestyle-related diseases, are significant. There has been a paradigm shift in the management of chronic diseases towards a patient-centered approach to self-management and prevention. Self-efficacy and patient activation have positive associations with healthy lifestyle behaviors, better QOL and functional status, fewer health visits, and decreased depressive symptoms [7–9]. For people with MS (PwMS), increasing self-efficacy predicts improvements in walking ability and physical and psychological impact of MS [10], lower depression scores and better quality of life [11]
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