Population-Based vs Health System and Insurer Records: Significant Underdiagnosis of PCOS

Polycystic ovary syndrome (PCOS) is one of the most prevalent cardio-metabolic disorders in women. However, PCOS diagnosis is often missed or delayed, which may have serious physical and mental health consequences. The extent of underdiagnosis remains unknown.

This work aimed to estimate the extent to which PCOS is underdiagnosed.

We systematically searched PubMed and Embase through July 2023 for studies reporting PCOS prevalence in the general population and the Health System or Insurer Records (HSIR).

We identified 6583 records, of which we included 7 population-based studies and 11 HSIR-based studies from the same populations in 3 countries. In the United States, population-based studies reported a PCOS prevalence between 4% and 19.6%, while HSIR-based studies reported 0.2% to 5.2%. In the United Kingdom, an HSIR-based study reported a PCOS prevalence of 1.34%, compared to around 8% prevalence in the population. In South Korea, 2 population-based studies reported a PCOS prevalence of 4.9% and 7%, compared to 0.12% to 0.33% in one HSIR, and 4.3% in another. When data were available, PCOS detection in HSIR appeared to improve over time, although it was still far from reflecting the actual prevalence in the population.

Our data revealed a substantially lower rate of PCOS in HSIR relative to population-based studies in the United States, the United Kingdom, and South Korea, likely indicating that PCOS is underdiagnosed and/or underreported. Overall, these findings highlight the critical need to improve the awareness of health care practitioners and payers, and likely the public at large, regarding PCOS.