Population-Based vs. Health System and Insurer Records: Significant Underdiagnosis of Pcos - A Systematic Review

Background: 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: To estimate the extent to which PCOS is underdiagnosed.

Materials and 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 6,583 records of which we included seven population-based studies and eleven HSIR-based studies from the same populations in three countries. In the USA, population-based studies reported PCOS prevalence between 4% and 19.6%, while HSIR-based studies reported 0.2% to 5.2%. In the UK, an HSIR-based study reported a PCOS prevalence of 1.34%, compared to around 8% prevalence in the population. In South Korea, two population-based studies reported a PCOS prevalence of 4.9% and 7%, compared to 0.12%-0.33% in one HSIR, and 4.3% in another. When data was 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 USA, the UK, and South Korea, likely indicating that PCOS is underdiagnosed and/or underreported. Overall, these findings highlight the critical need to improve the awareness of healthcare practitioners and payers, and likely the public at large, regarding PCOS.