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.

Online health information seeking: how people with multiple sclerosis find, assess and integrate treatment information to manage their health

“…3,13 People with MS most commonly seek health information on the Internet before and after doctor visits. 2,28 While others have found that people with MS do not readily discuss their online searching with doctors, 9,13 we found that discussions of Internet searching with doctors were highly desired. Whether or not patients discuss their use of the Internet is likely dependent on the attitudes of patients towards their information needs, the attitude of health professionals towards online information and the nature of the doctor-patient relationship.…”

“…In fact, while health professionals and MS societies remain important and trusted information sources for people with MS, the Internet is gaining prominence. 2,3 Concurrent with these shifts in treatment and information availability has been a broader move to engage consumers with the evidencebased health movement. 4,5 Evidence-based treatment information is increasingly being provided to consumers online.…”

“…10 Information is a critical component of informed decision making and selfdetermination, yet the unmet information needs of people with MS are well documented. 11,12 Previous studies have explored online health information seeking in MS, 2,3,9,13 but few have considered how people integrate MS treatment information from online and offline sources.…”

“…This coincided with the ready opportunity to find and share information afforded by the Internet. In fact, while health professionals and MS societies remain important and trusted information sources for people with MS, the Internet is gaining prominence …”

Patientenadäquate Information bei Multipler Sklerose – eine systematische Literaturübersicht

“…Somerset et al[62] und Lejbkowitz et al[47] stellten fest, dass der Arzt und die Krankenschwester die primären Informationsquellen waren. In der Untersuchung von Bishop et al[42] und Poschwatta[61] waren ebenfalls die behandelnden Ärzte die wichtigste Informationsquelle. Solari et al[34] ermittelten den Wunsch nach einer Fachkraft mit der Fähigkeit zur laienverständlichen Sprache als primäre Informationsquelle.Verfügung gestellten Informationen wird ambivalent bewertet.…”