US Veterans Administration Autosomal Dominant Polycystic Kidney Disease Cohort: Demographic, Comorbidity, and Key Laboratory Data Characteristics

Abstract

Background We used the largest integrated US health care system, the Veterans Health Administration (VHA), to establish a robust resource for demographic, longitudinal outcome, and predictive modeling studies in autosomal dominant polycystic kidney disease (ADPKD). Methods We built the ADPKD cohort by extracting the relevant electronic health record (EHR) data from nationwide VHA database (years 1999-2020). Results We identified 12,217 patients diagnosed with ADPKD. By the end of the 20-year study period, 5,342 ADPKD patients were deceased, 1,583 were alive but reached end-stage kidney disease (ESKD), and 4,827 remained alive without ESKD. Most demographic characteristics of this ADPKD cohort resemble the total U.S. veteran population. For example, 94% were males, 45% age 65 years or older, 85% non-Hispanic, 66% white; however, 19% were Black/African Americans (vs. 12% in the general veteran population; a relevant enrichment after considering age and sex distributions between races). The comorbidities overrepresented in the ADPKD cohort include hypertension (89% vs. 50%), diabetes (32% vs. 22%), depression (40% vs. 10%), chronic obstructive pulmonary disease (30% vs 6%), and congestive heart failure (21% vs 1%). In contrast, obesity was under-represented in veterans with ADPKD (30% vs 41%). Conclusions We established a large EMR-based cohort of ADPKD veterans. Here we provide initial analysis of its demographic, comorbidity and key laboratory data.