Representation in Aphasia Research: An Examination of US Treatment Studies Published Between 2009 and 2019

Purpose: The external validity of aphasia treatment research relies on diverse and representative participants. The purposes of this study were (a) to examine whether reporting of patient-reported age, sex, and race/ethnicity has improved since Ellis (2009) and (b) to evaluate whether these demographic variables were consistent with population-level estimates of stroke survivor demographics in the United States. Method: A scoping review examined U.S.-based aphasia treatment studies published between 2009 and 2019 and characterized the percentage of studies reporting age, sex, and race/ethnicity. Summary statistics for these variables were calculated and compared statistically with a population-based study of stroke survivors. Results: It was found out that 97.1% of studies reported age, 93.5% reported sex, and 28.1% reported race and/or ethnicity. Within reporting studies, participant mean age was 58.04 years, 61.6% of participants were men, and 38.4% were women; 86.5% of participants were White, 11.0% were Black, 2.0% were Hispanic/Latino, and 0.5% fell in other racial categories. All three variables were statistically different from the study of Kissela et al. (2012). Discussion: Despite being highlighted as an issue by Ellis (2009), less than 30% of recent aphasia treatment studies reported race or ethnicity, and participants do not appear to be demographically representative compared with estimates of stroke survivors living in the United States. These issues may negatively impact the ecological validity of aphasia treatment research. Aphasia researchers should more consistently report participant race and ethnicity and follow current guidelines for increasing the demographic representation of women and minorities.