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.
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.
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.
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.