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

Abstract

Being well-informed about multiple sclerosis (MS) and its treatment is associated with a number of positive clinical and psychosocial outcomes, including higher levels of quality of life and personal control, better coping and adjustment after diagnosis, and reduced dependence on health providers. Understanding the sources from which people with MS seek information is important in assuring that timely, accurate, and useful information is available in a medium and format that is accessible. The purpose of this study was to explore the information seeking behavior of people with MS and to analyze the extent to which information source was associated with personal, demographic, and illness variables. A sample of 409 adults with MS recruited through the National Multiple Sclerosis Society (NMSS) completed questionnaires about their primary source of MS information and demographic and illness characteristics. Descriptive statistics, logistic regression, and bivariate correlation analyses were applied to the data to identify the most frequently utilized sources of MS information and examine relationships between information source and to personal, demographic, and illness variables. The most frequently identified sources of information about MS and its treatment was physicians or neurologists, followed by the Internet. Age was an important variable in distinguishing the primary information source between groups. Generally, younger patients are more likely to obtain MS information primarily through the Internet while older patients obtain information primarily through their neurologist. This study provides information useful in effectively targeting MS information and understanding how persons with MS access information, Further research is needed to understand differences in the quality, quantity, and sources of MS information available, the extent to which differences in sources of MS information may affect patients' decisions about their treatment, and how individual variables may affect patients' ability to access, understand, and remember educational material.