Analysis of Nationwide Data to Determine the Incidence and Diagnosed Prevalence of Autosomal Dominant Polycystic Kidney Disease in the USA: 2013-2015

Background: This study addresses an important gap, as it is the first US nationwide, epidemiologic study of ADPKD incidence and prevalence.

Summary: This 3-year, observational study utilized data from Truven Health MarketScan® administrative claims, as well as cross-sectional data from the National Ambulatory Medical Care Survey (NAMCS). We estimated the annual incidence and diagnosed prevalence using population-based data on over 170 million de-identified patients to provide the most current epidemiologic estimates available. The ADPKD-diagnosed prevalence was 4.3 per 10,000 in the NAMCS, which closely corresponded with age-adjusted rates from patients with either commercial insurance or employer-sponsored Medicare supplemental insurance. The annual incidence was 0.62 per 10,000. Both nationwide data sets indicate that approximately 140,000 patients are currently diagnosed in the USA. We also found significant differences by gender and age. Females are nearly twice as likely as males to be diagnosed in early adulthood, while the incidence in males was highest in those aged 65 years or older. ADPKD appears more likely to be diagnosed in men after disease progression or the development of chronic kidney disease.

Key Messages: Our results revealed striking age and gender differences in the incidence of ADPKD. Young women are diagnosed with ADPKD at nearly twice the rate of young men, perhaps due to the use of ultrasound in women during child-bearing years. This points to a need for increased recognition of ADPKD, with an emphasis on younger men in particular. ADPKD has been inaccurately perceived as a common condition based on misinterpretation of early epidemiologic data (1957) confirmed by our data and recent European data. ADPKD affects approximately 140,000 patients in the USA and meets the criterion for a rare disease. Our results indicate a need for further study of gender and ADPKD diagnosis, progression, management, and outcomes.