Kidney stone prevalence based on self-report and Electronic Health Records: insight into the prevalence of active medical care for kidney stones

Abstract

AbstractIntroductionKidney stone prevalence estimates vary depending on sampling methodology. We compared rates of patient-reported kidney stone disease to Electronic Health Records (EHR) kidney stone diagnosis using a common dataset to evaluate for socio-demographic differences in these populations, including between those with and without active care for kidney stones.MethodsFrom the All of Us research database, we identified 21,687 adult participants with both patient-reported medical history and EHR data. We extracted patient-reported kidney stone history and medical encounters for kidney stones from EHR. We compared differences in age, sex, race, education, employment status and healthcare access between patients with self-reported kidney stone history without EHR data to those with EHR-based diagnoses.ResultsIn this population, the self-reported prevalence of kidney stones was 8.6% overall (n=1877), including 4.6% (n=1004) who had self-reported diagnoses but no EHR data. Among those with self-reported kidney stone diagnoses only, the median age was 66, 43% were male, and 92% were Non-Hispanic Whites, compared 120,623 (53.9%) in the entire All of Us cohort. The EHR-based prevalence of kidney stones was 5.7% (n=1231), median age 67, of whom 45% were male and 92% were Non-Hispanic White. No differences were observed in age, sex, education, employment status, rural/urban status, or ability to afford healthcare between groups with EHR diagnosis or self-reported diagnosis only. Of patients who had a self-reported history of kidney stones, 24% reported actively seeing a provider for kidney stones.ConclusionsKidney stone prevalence by self-report is higher than EHR-based prevalence in this national dataset. Using either method alone to estimate kidney stone prevalence may exclude some patients with the condition, although the demographic profile of both groups is similar. Approximately one in four patients report actively seeing a provider for stone disease.