Survey of multiple sclerosis in northern California

A random sample of 493 multiple sclerosis (MS) patients registered with the Northern California Chapter of the Notional MS Society was surveyed by mai l and subsequently interviewed with regard to their MS, life style, diet, m edical treatment family history, and insurance coverage. Of this sample, 16 8 patients (34%) returned completed questionnaires. The answers on the ques tionnaire were entered into a database and scores on the extended disabilit y status scale (EDSS), the neurologic rating scale (NRS), the ambulation in dex (AU, and the mean disability scale (MDS) were determined from the patie nt's answers to a portion of the questionnaire using a previously validated conversion program. This survey population of /68 patients seemed to repre sent well both the random sample and the frame population from which it was drown. Patients commonly experienced symptoms for which there are medical treatments currently available such as bladder symptoms, fatigue, spasticit y, pain, and depression. Surprisingly, however, with the exception of spast icity, patients were only infrequently treated for these complaints. In add ition, despite the recent approval of the beta-interferons and copolymer I in the treatment of MS, only 74% of the appropriate candidates for such tre atment had these options discussed with them and only 45% ever actually rec eived such treatment Certain clinical features and dietary habits were stro ngly associated with both EDSS scores and total disability. Not unexpectedl y, either a progressive disease course or the presence of neurological dysf unction in any one of a number of functional areas (e.g bladder, vision, co gnitive change, etc.) correlated with higher EDSS scores and greeter total disability Fatigue was also strongly correlated with disability. Indeed, fa tigue accounted tin whole or in part) for 65% of the disability experienced by patients; an observation which only underscores the fact that fewer tha n one third of the patients who experience fatigue have ever been tried on medications. Interestingly, the only factors associated with lower EDSS sco res and less total disability were exercise and alcohol consumption. Such a ssociations from a single survey, however, do not establish causation. It i s the purpose of this study to establish a baseline level of function withi n this survey population so that future surveys in the some set of individu als can allow a prospective assessment of how health outcome has influenced different aspects of the patient's medical care, lifestyle, and insurance coverage.