Racial/Ethnic Disparities in Perception of Health Status and Literacy in Adult Patients With Chiari Malformation Type I: Insights From the All of Us Research Program

BACKGROUND AND OBJECTIVES: Racial/ethnic disparities in health literacy, self-perception of health status, and barriers to care access have been described for many disease processes. However, few studies have characterized these factors in patients with Chiari malformation type I (CM-1). METHODS: We performed a cross-sectional analysis of data from the National Institutes of Health All of Us Research Program. Adults with CM-1 were identified through International Classification of Diseases, ninth revision and 10th revision diagnostic codes and stratified by race/ethnicity: non-Hispanic White (NHW), non-Hispanic Black or African American, and Hispanic or Latino (HL). Patient demographics and socioeconomic status were examined. Group-level differences in survey-reported baseline health status, health perceptions, health literacy, and perceived barriers to care were evaluated. RESULTS: Of the 966 patients identified, 552 (57.1%) were NHW, 225 (23.3%) were non-Hispanic Black, and 189 (19.6%) were HL. Socioeconomic status varied between strata, with the highest education level, income level, employment, retirement, marital status, and home ownership reported by NHW patients ( P < .001 for all). Average pain was highest among HL patients, as well as proportions of best and worst general health status (all P < .001). The NHW cohort was able to accomplish more of their everyday activities than the other cohorts ( P = .003). The worst general mental health ( P = .015), general physical health ( P = .004), and general quality of life ( P < .001) were reported by HL patients. The HL cohort had the highest rates of difficulty in understanding information, required health material assistance, and had low medical form confidence ( P < .001 for all). Furthermore, difficulties affording follow-up care ( P = .041), concerns about payment ( P = .033), and transportation-related delays in care ( P = .002) were most common in the HL cohort. CONCLUSION: The results of our study indicate racial/ethnic disparities in CM-1 patients' perception of their health, health literacy, and access to care.