Objective: To analyse patient-reported outcome measures and to assess acceptability, test-retest reliability and responsiveness of the Euroqol measure (EQ), a conceptual health-related quality-of-life measure (HRQoL), for patients with muscular dystrophy.
Materials and method: One hundred and four consecutive outpatients completed the EQ in Reims university hospital between April 2002 and February 2005, and 60 patients were followed over 1 year. The acceptability of the EQ-5D and EQ-EVA measures was assessed by using the completion rate per dimension as an indicator; test-retest reliability was assessed with kappa and Spearman coefficients for qualitative data and the intraclass coefficient correlation (ICC) for quantitative data. Over the year, EQ-EVA score responsiveness was calculated according to the standardised response of the mean (SRM).
Results: Participation rate (96.3%) and EQ-5D completion rates were excellent, between 95.2 and 100%. Test-retest reliability after 15+/-7 days was excellent for the autonomy domain (kappa coefficient=0.81) and moderate for the other dimensions. EQ-EVA score stability was satisfactory (ICC=0.72). Global perceived health (EQ-EVA) was not associated with level of dependency but was associated with pain domain scores. EQ-EVA responsiveness was moderate (effect size=0.6) in the patients with a change in health status over 1 year and in reference to the relevant SF-36 item.
Conclusion: EQ is a well-accepted tool for measuring HRQoL in this group of patients with muscular dystrophy. The prognostic interest of these subjective measures has yet to be demonstrated; however, these measures provide interesting additional information.