Abstract

Objectives

In multiple sclerosis (MS), studies reporting mean EQ-5D-5L health utility values ranged from 0.31 to 0.82, and a 2024 systematic review found no published anchor-based estimates for EQ-5D-5L minimal important change (MIC). We derived age-sex-specific utility reference values and MIC of the EQ-5D-5L in a large UK sample with MS.

Methods

The Trajectories of Outcomes in Neurological Conditions-MS study calculated EQ-5D-5L age-sex and disability subtype-specific utility estimates. Multiple regression identified possible predictors of health status for inclusion into a structural equation model. Calculation of MIC used an anchor-based method.

Results

Among 5509 participants, aged 17 to 87, females (73.7%), the mean EQ-5D-5L utility was 0.682 (95% CI: 0.675-0.688; range −0.28-1.0). There was an age gradient and difference between male and female utilities across each age group (age: F 34.3 (df 11, 497): P .001). In structural equation model, higher self-efficacy improved EQ-5D-5L, whereas cognitive problems, progressive disease, fatigue, bladder problems, and stigma decreased EQ-5D-5L. In the longitudinal sample comprising 2066 people with MS, mean utility value at follow-up was 0.673 (95% CI: 0.662-0.683) and MIC was 0.146 (95% CI: 0.137-0.154). MIC varied significantly by MS subtype and for those reporting a relapse within the past year.

Conclusions

Health utility values for MS were consistently lower than those found in the English population and were influenced by factors amenable to clinical intervention. Anchor-based MIC varied by subtype and relapse history, showing that when assessing the significance of changing health status from the perspective of those with MS, a uniform MIC should not be used.