Comparing a self report questionnaire with physician assessment for determining multiple sclerosis clinical disease course: a validation study

Abstract

Determining multiple sclerosis (MS) clinical course is important in research and clinical practice. However, many patients do not know their clinical course, limiting the option to use self-report in research studies including surveys. In order to address this, we developed a self-report item to be used in self-administered mailed surveys displaying graphically the courses of MS. The validity of this item was then evaluated by comparing physician-assessed disease clinical course to patient response on the self-report item on 94 of 99 consecutive patients seen in an MS specialty clinic. Kappa statistics were calculated comparing self-assessed versus physician-assessed MS clinical course for the four common MS clinical courses (kappa=0.45) and for relapsing remitting versus other courses (kappa=0.62) indicating substantial agreement. Subsequent administration of the item by mail to 1371 individuals with MS in Washington and Montana determined that while most individuals responded as intended to the item, persons with less than a high school education (P=0.009) or over the age of 60 ( P = 0.002) were significantly more likely to leave the item blank. It appears that this item may be used to obtain a rough estimate of MS clinical course in research using self-report surveys where physician assessments are impractical.