Primary Progressive Aphasia and Non-Medical Factors Related to Health Outcomes: A Retrospective Study

Abstract

Primary progressive aphasia (PPA) is a neurodegenerative disease involving insidious onset language loss in the context of relatively spared cognitive function, where language is the initial and dominant factor impacting activities of daily living (Mesulam, 2001).  Detection and identification of PPA requires a level of interdisciplinary expertise and resources that are not uniformly available across healthcare settings at the local and global levels (Bahia, 2007; Duran-Aniotz et al., 2021; Guimarães et al., 2013; Hogan et al., 2016; Knopman & Roberts, 2011; Onyike et al., 2020; Pijnenburg et al., 2004). This potential inequity raises concerns for increased risk of underdiagnosis, misdiagnosis, and/or delayed diagnosis of PPA, in turn impacting access to the required specialty care. The current study sought to characterize the PPA population at a Southeastern United States academic medical center, and to examine potential delays in PPA diagnosis and access to speech-language pathology services related to social determinants of health. We hypothesized that individuals from minoritized and otherwise disenfranchised groups would have longer duration of time between first reported symptom, and PPA diagnosis. Further, we hypothesized that these groups would be less likely to be referred to speech-language pathology services. Our results revealed a significant lack of sample diversity in terms of race, ethnicity, language practices, and queer identity. Within our overwhelmingly White, non-queer-identifying sample, factors related to rurality and economic status did not predict time to diagnosis or referral to speech pathology. A discussion of PPA and related disorders as they relate to social determinants of health follows.