Quality of life lower for people with MS regardless of age, gender
Study cites fatigue, bladder problems, and stigma as key factors
People living with multiple sclerosis (MS) have consistently lower quality of life than the general population — regardless of age or gender, a new study shows.
The scientists also identified several factors that are significantly associated with worse quality of life in MS. These included disease symptoms such as bladder problems and fatigue, as well as societal stigma and reduced self-confidence.
The study, “EQ-5D-5L in Multiple Sclerosis: Estimated Utility Values, Minimal (Clinically) Important Changes, and Direct and Indirect Influences Over Time,” was published in Value in Health.
Study uses standard tool to measure quality of life
MS is a chronic disorder that can cause symptoms including fatigue, reduced mobility and cognition, as well as mental health challenges. Studies have shown MS can significantly reduce quality of life for those living with it.
To measure health-related quality of life, researchers often use a tool called the EQ-5D-5L. This questionnaire asks people to rate five categories — mobility, self-care, usual activities, pain/discomfort, and anxiety/depression — on a scale from zero (no problems) to five (extreme problems).
While the EQ-5D-5L has been used in MS research, there hasn’t been a clear standard for defining the minimal important change (MIC) — the smallest change in EQ-5D-5L score that indicates a meaningful difference in how a person perceives their quality of life.
To calculate the MIC, researchers analyzed data from 2,066 people with MS who participated in a U.K. study called TONiC-MS. Participants had EQ-5D-5L scores collected several times over an average follow-up of nearly two years (22.6 months).
During that time, 53.4% of participants reported their disability was stable, 5.4% said it had gotten less severe, and 41.2% said it had worsened.
Using statistical models, the researchers derived an overall MIC of 0.146.
However, the MIC varied considerably by subtype. For people with relapsing-remitting MS (RRMS), the MIC was higher, at 0.174. In progressive forms of MS, the MIC was noticeably lower — 0.098 for secondary progressive MS and 0.092 for primary progressive MS.
“Our findings show that those with progressive MS appear to be more sensitive to declining health status than those with RRMS,” the researchers wrote.
Multiple factors affect quality of life for people with MS
In addition to calculating MIC, the researchers analyzed EQ-5D-5L scores from a broader group of TONiC-MS participants to calculate estimated health utility — a statistical measure used in economic healthcare analyses.
Results showed that across all ages and genders, people with MS had worse health utility values than the general population, reflecting a lower quality of life for those with the condition.
In further statistical models, the researchers found several factors that were statistically associated with health utility values among MS patients. Specifically, scores were worse in people with progressive types of MS, in people living with the condition for longer, as well as in those with cognitive problems, fatigue, or bladder problems.
People who reported experiencing more stigma also had significantly lower scores. In contrast, those with higher self-efficacy scores — indicating more confidence in one’s own abilities — reported a better quality of life.
These data imply that interventions aimed at addressing these factors may be especially helpful for improving quality of life for those with MS, the researchers said.
“This research would not have been possible without the generosity of thousands of people with MS across the UK who shared their experiences. Their contribution has allowed us to quantify just how deeply MS affects quality of life, and to identify what matters most to patients,” Carolyn Young, MD, co-author of the study at the We hope these findings will help shape more responsive, compassionate services for people living with MS.”
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