Evaluation of Self Administered MS Disease Course Questionaire.

TitleEvaluation of Self Administered MS Disease Course Questionaire.
Publication TypeJournal Article
AuthorsDiGiacomo A, Hinton K, Johnson KL, Amtmann D, Bowen JD
JournalInternational Journal of MS Care

Multiple sclerosis (MS) is a complicated disease with at least four different subtypes. Determining MS subtype is important for both treatment and the patient’s ability to understand and modify expectations about disease course. Although MS subtype is important information for researchers to collect, many patients do not know their MS type, limiting the option to use self-report. To address this, a self-report item displaying graphics of various courses of MS was developed that can be used in self-administered mailed surveys. This item has been evaluated by comparing physician-assessed disease subtype with patient response on this self-report item on 99 consecutive patients seen in an MS specialty clinic. A κ-statistic was calculated (κ = 0.62) indicating that the questionnaire has good reproducibility compared with physician-assessed MS disease subtype. In addition, this questionnaire was administered by mail to approximately 1400 individuals with MS in Washington and Montana. The proportion of individuals with different MS types was consistent with the distribution of MS subtype reported in literature. A low level of missing data (6%) suggested that most participants were able to respond to the item. However, those who had less than a high school education (P = .009) and/or were over age 60 years (P = .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 type in research using self-report surveys.

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