Clinical Report: Underdiagnosis of PCOS Evident from Population vs Health Records

Overview

This systematic review reveals a significant underdiagnosis of polycystic ovary syndrome (PCOS) when comparing population-based prevalence data with health system and insurance records (HSIR). Across the United States, United Kingdom, and South Korea, HSIR consistently reported much lower PCOS prevalence than population studies, indicating missed or delayed diagnoses.

Background

PCOS is a common genetic disorder with substantial cardiometabolic and reproductive morbidity, affecting women primarily during reproductive years. It is associated with increased risks of hypertension, metabolic syndrome, cardiovascular events, and mental health disorders such as anxiety and depression. Despite its high prevalence and serious health consequences, PCOS diagnosis is often missed or delayed, leading to increased healthcare costs and reduced quality of life. Timely diagnosis and management are critical to mitigate these adverse outcomes.

Data Highlights

Key Findings

• Population-based studies report PCOS prevalence ranging from 4% to nearly 20%, while HSIR data report much lower rates, often below 5%.
• In the US, HSIR prevalence is as low as 0.2%, contrasting sharply with population estimates up to 19.6%.
• The UK shows a similar pattern, with HSIR prevalence at 1.34% versus approximately 8% in population studies.
• South Korean HSIR data show extremely low prevalence (0.12%–0.33%) compared to population studies (4.9%–7%), though one HSIR reported 4.3%.
• PCOS detection in HSIR appears to improve over time but remains substantially below true population prevalence.
• The findings strongly suggest widespread underdiagnosis and/or underreporting of PCOS in clinical and insurance records.

Clinical Implications

Clinicians should maintain a high index of suspicion for PCOS, especially given its underrecognition in health records. Improved awareness and diagnostic vigilance are essential to ensure timely identification and management, which can reduce long-term cardiometabolic and psychological complications. Healthcare systems and payers should also enhance coding and reporting practices to better capture PCOS prevalence.

Conclusion

This review highlights a critical gap between true PCOS prevalence and its documentation in health system and insurance records, underscoring the need for improved diagnostic efforts and awareness to address this underdiagnosis.

References

1. Hafiz et al. 2023 -- Comparing Population Data with Health System and Insurance Records: Notable Underdiagnosis of PCOS