Quality of life in multiple sclerosis: measuring the disease effects more broadly

Abstract

Objective: To compare the Expanded Disability Status Scale (EDSS) and self-rated quality of life scores (SF-36 Health Survey) as measures of disease impact in a representative sample of MS patients.

Background: The EDSS is the most common outcome measure of impairment/disability for MS patients but is heavily weighted toward mobility. Sensitive outcome measures are needed that also capture other aspects of the effects of MS.

Methods: The authors performed a cross-sectional study of the cohort of all individuals with onset of MS between 1976 and 1986 who were diagnosed before 1995 in Hordaland County, Norway. A total of 194 patients (94%) participated.

Results: The patients had lower mean scores for all eight SF-36 health dimensions compared with sex- and age-adjusted scores in a general population. EDSS scores correlated highly with physical functioning (r = -0.86, R2 = 0.73), and explained some of the variation in social functioning (r = -0.48, R2 = 0.23) and general health (r = -0.46, R2 = 0.21) but little for the other dimensions.

Conclusions: The SF-36 captures the broad effects of MS, and the results showed that patients also are bothered frequently with health problems such as bodily pain and low vitality. These problems, which are not reflected in the Expanded Disability Status Scale, should be given more attention in the treatment of MS and when evaluating interventions.