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

Abstract

Context: 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.

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

Methods: 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).

Results: 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.

Conclusion: 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.