Representation And Generalizability In Neuropsychologically-Focused Multiple Sclerosis Research: Who Are We Studying And Who Does It Apply To?

Abstract Objective MS impacts individuals from diverse racial/ethnic groups, yet they are not always well represented in research. The objectives of the current study are to examine how often neuropsychologically-focused MS research (NFMSR) studies: (1) include diverse populations; (2) explicitly describe the race/ethnicity of their participants; and (3) discuss generalizability/cultural implications. Methods A sample of NFMSR studies (defined here as studies examining cognitive functioning, mood, neuroimaging, fatigue, and quality of life) published within major journals between 2017–2020 were identified. Articles focusing on clinically isolated syndrome or pediatric populations were excluded. Variables of interest included sample size, sex/gender, race/ethnicity, age, education, socioeconomic status (SES), generalizability/cultural limitations, discussion of racism/disparities, and recruitment procedures. Data were coded and analyzed in IBM’s Statistical Package for the Social Sciences (SPSS; version 27). Results Race/ethnicity was not often reported in NFMSR studies, and when described, the representation of diverse individuals with MS was low (i.e., samples were mostly Caucasian). In addition, specific information about recruitment methods and SES was lacking. Generalizability/cultural implications or disparities were not discussed in the majority of studies. Report of education was variable, while sex, age, disease course, and EDSS were more often reported. Conclusions To the authors’ knowledge, this is the first study to highlight the significant gaps in representation in NFMSR. These results have significant implications for how we should be using the current literature to characterize patients or guide treatments. In addition, the current study serves as a call to action for MS researchers to work toward more inclusive and generalizable studies.