Sources of information about multiple sclerosis: Information seeking and personal, demographic, and MS variables

Abstract

Abstract . Being well-informed about multiple sclerosis (MS) and its treatment is associated with a number of positive clinical andpsychosocialoutcomes,includinghigherlevelsofqualityoflifeandpersonalcontrol,bettercopingandadjustmentafterdiagnosis,andreduceddependenceonhealthproviders.UnderstandingthesourcesfromwhichpeoplewithMSseekinformationisimportantin assuring that timely, accurate, and useful information is available in a medium and format that is accessible. The purpose ofthis study was to explore the information seeking behavior of people with MS and to analyze the extent to which informationsource was associated with personal, demographic, and illness variables. A sample of 409 adults with MS recruited throughthe National Multiple Sclerosis Society (NMSS) completed questionnaires about their primary source of MS information anddemographic and illness characteristics. Descriptive statistics, logistic regression, and bivariate correlation analyses were appliedto the data to identify the most frequently utilized sources of MS information and examine relationships between informationsource and to personal, demographic, and illness variables. The most frequently identified sources of information about MS andits treatment was physicians or neurologists, followed by the Internet. Age was an important variable in distinguishing the primaryinformation source between groups. Generally, younger patients are more likely to obtain MS information primarily through theInternet while older patients obtain information primarily through their neurologist. This study provides information useful ineffectively targeting MS information and understanding how persons with MS access information, Further research is needed tounderstand differences in the quality, quantity, and sources of MS information available, the extent to which differences in sourcesof MS information may affect patients’ decisions about their treatment, and how individual variables may affect patients’ abilityto access, understand, and remember educational material.Keywords: Multiple sclerosis, information seeking, health promotion