Published online by Cambridge University Press: 09 November 2020
Multiple sclerosis (MS) is a chronic, typically progressive immune-mediated disease characterized by inflammation and demyelination in the central nervous system (CNS), and is associated with a wide range of neurological, physical, and psychosocial effects. For people living with MS, access to relevant, timely, and accessible health information and resources may contribute to effective illness management, psychosocial health, and quality of life (QOL). In this study, we sought to increase understanding of the specific types of information most wanted by people with MS, as well as the sources and effects of this information. Specifically, we surveyed 748 adults with MS about (a) the sources from which they obtain information about MS, (b) the type of information that is most important in terms of improving their QOL, and (c) specific topics about which they would like to have more information, services, or resources. Content analysis of the qualitative results demonstrated the diversity of information sources accessed by people with MS and the importance of providing information through different formats and media. The participants prioritized information related to new MS medications and treatments, physical and mental health and wellness, and local opportunities for support. Implications for practicing rehabilitation counselors are discussed.
This manuscript is an original work that has not been submitted to nor published anywhere else. This manuscript is based on a large national study conducted for the National MS Society. The results of the analyses presented in this manuscript have previously been provided to the National MS Society in the context of an unpublished final project report. Publications regarding separate research questions using the same original participant sample are planned or have been produced, however not based on current research questions or topics. All authors have read and approved the paper and have met the ICMJE criteria for authorship. The authors have read the discussion provided by the ICMJE on overlapping publications.
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