Exploring the Needs of People Living with Multiple Sclerosis

Background: Living with multiple sclerosis presents a variety of challenges for patients. Previous research has identified needs related to psychological support, obtaining information about MS and its treatment, accessing healthcare, adapting to changes in social roles and financial security. This study updates a 2012 national needs assessment conducted by the Multiple Sclerosis Association of America. Expanded questions explore involvement with MS Centers, use of MS Disease Modifying Therapies (DMTs), and issues related to being an empowered consumer of healthcare services.

Objectives: This study examines changing and emerging needs of people living with MS and examines differences in need by gender, race, age, length of time living with MS, involvement with an MS Center and use of DMTs. In addition, factors that predict higher levels of consumer empowerment are explored.

Methods: The study will utilize data from a 2018 national MS Needs Assessment, conducted by the Multiple Sclerosis Association of America in cooperation with the North American Research Committee on MS and the College of Saint Rose (Albany, NY). The survey will be distributed to a random sample of 3,000 people living with MS. The 109-question survey includes open- and closed-ended questions that explore symptoms, needs, use of DMTs, and factors associated with health empowerment (including goal setting, managing psychosocial aspects, collaboration with healthcare providers, tolerance of uncertainty and health literacy). Data will be collected by late February 2018 and analyzed using frequencies, t-tests and analysis of variance. Qualitative data will be explored using a combination of conventional and summative content analysis methods. Differences in needs based upon involvement with MS Centers and use of DMTs will be explored. In addition, logistic regression analysis will be used to identify factors and attributes that contribute to higher levels of patient empowerment.

Results: Data analysis will commence upon completion of data collection on February 28, 2018 and explore the issues described above.

Conclusions: Findings from the study will identify needs of people living with MS in the United States, differentiating among populations served by MS Centers and those served by community-based physicians, as well as by DMT use and other criteria. Factors that contribute to higher levels of patient empowerment will also be identified.