MG quality-of-life measures lack consistency, limiting usefulness

Myasthenia gravis (MG) can have a substantial impact on a person’s quality of life, but currently available data make it hard to nail down a number that can represent the average impact of the disease in standard health economic models, a review study showed.

Score estimates in the EuroQol 5-Dimension (EQ-5D) and EQ-5D visual analog scale (VAS) — both used to assess health-related quality of life for economic evaluations — “indicate impaired patient-reported health status in MG,” the researchers wrote.

However, they found high score variability among published studies, “indicating that most of the observed variability reflects true differences across study populations and contexts rather than sampling error alone,” they wrote, and “pooled EQ-5D utility and EQ-VAS estimates … should be treated as descriptive summaries rather than definitive health-state utility inputs.”

Future studies should adopt standardized methods for reporting EQ-5D data by clearly identifying the country-specific value set, breaking down outcomes by disease severity, and detailing responses across individual health domains, the team said.

The review study, “Patient-reported health utility in adults with myasthenia gravis: a systematic review and meta-analysis of EQ-5D outcomes,” was published in BMC Neurology.

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Health utility

MG is an autoimmune disorder that causes muscle weakness and fatigue. MG symptoms can make some activities difficult or impossible, and the disease can take a major toll on patients’ quality of life.

To measure the impact of different diseases, economists often rely on measures of health utility — essentially numbers that denote how someone’s health-related quality of life compares with the imagined ideal of perfect health.

The EQ-5D is a common tool for calculating health utility using a patient-reported questionnaire. A score of one would indicate perfect health, while lower scores reflect poorer health.

One element of EQ-5D, the EQ-VAS, can also be used on its own to help measure health utility. For the EQ-VAS, patients are asked to rate their current health on a scale from zero (the worst health imaginable) to 100 (the best health imaginable).

Health utility data can help policymakers determine how best to allocate finite healthcare resources. A single, average score representing the impact of a particular disease can be a useful tool.

A team of researchers in India systematically analyzed studies published up to February 2026 reporting on EQ-5D and EQ-VAS data in adults with MG. Ten studies were included in the final meta-analysis.

Eight studies, covering 1,514 patients, provided EQ-5D data, while seven studies reported data on EQ-VAS from 2,760 patients. Across these studies, the average EQ-5D utility score was 0.74, and the average EQ-VAS was 66. These scores are relatively low, “consistent with a clinically meaningful patient-reported burden in MG,” the researchers wrote.

However, variability across studies was extremely high for both the EQ-5D and the EQ-VAS. This variation may be influenced by factors such as access to treatment, cultural perceptions of health, and differences in how studies were conducted.

The team said those results indicate that it’s not appropriate to treat the average scores as representative of the experience of an average person with MG.

Health utility scores tended to be worse in patients with more severe disease, as reflected by a higher MGFA class. Again, however, there was too much variability to nail down one number as a reliable average.

Given this variability, the team said, future research on health utility in MG needs to be more standardized. Because different countries and populations value health states differently, the researchers advised decision-makers to rely on research conducted within their jurisdictions rather than on broader averages.

“Although pooled estimates indicate substantial health impairment and a clear severity gradient across MGFA classes, substantial between-study [variability] limits the precision and generalizability of pooled estimates,” the team wrote. “Future research should prioritize [standardizing study methods] to enable more reliable health state utility estimation for economic modelling.”

The researchers also noted that because most published studies on EQ-5D and EQ-VAS in people with MG are from Europe and North America, additional studies are needed in other regions, especially Asia.