Reconsidering EQ-5D; quality of life domains that are important for multiple sclerosis patients

OBJECTIVES: This study aimed to estimate the health-related quality of life (HRQoL) of patients with multiple sclerosis (MS) in Europe and North America and assess the extent to which MS patients consider that EQ-5D, a generic HRQoL measurement tool, captures the dimensions that are important to their wellbeing. METHODS: An online survey, of non insitutionalised individuals with MS was conducted to collect data on HRQoL (EQ-5D-5L and EQ-5D-5L VAS), important HRQoL aspects that respondents thought were not captured by the EQ-5D-5L and key HRQoL aspects that changed over the course of their illness. 7 organisations either at national or supranational level were invited to voluntarily share the survey tool with their network of patients. RESULTS: 246 responses from France (n=97), USA (n=70), Romania (n=44), UK (n=25) and Germany (n=10) demonstrated that MS patients had an average EQ-5D-5L index and VAS score of 0.56 and 63 respectively, whereas health state utility differences (p<0.001) were observed between countries, ranging from 0.77 in Germany to 0.49 in France. Important QoL aspects were not captured by EQ-5D-5L for 98.7% (n=236) of respondents (n=239), including Fatigue/Weakness (18%), Tingling/Numbness (14%), Balance/Dizziness (14%) and Bladder problems (13%). Less commonly reported aspects were Vision (9%), Bowel (7%) and Sexual (7%) problems and Maintenance of relationships (6%). Following Mobility (12%), Fatigue/Weakness (11%) and Balance/Dizziness (9%) were also two of the most commonly reported QoL aspects that changed over the course of patients’ illness. CONCLUSIONS: Our analysis highlights a significant utility loss of 28% for individuals with MS, when compared to the general population and that utilisation of the EQ-5D-5L in HRQoL measurement might fail to capture key QoL attributes in MS patient populations. Further mapping of MS patients’ utilities against generic tools is required in order to ensure that these instruments capture all QoL aspects important to MS patients.