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

Area of Science:

• Endocrinology
• Public Health
• Epidemiology

Background:

• Polycystic ovary syndrome (PCOS) is a common endocrine disorder with significant cardio-metabolic and mental health implications.
• Delayed or missed diagnosis of PCOS can lead to severe health consequences.
• The true extent of PCOS underdiagnosis is not well-established.

Purpose of the Study:

• To quantify the degree of underdiagnosis of PCOS by comparing prevalence rates.
• To assess the gap between PCOS prevalence in the general population and in health system or insurer records (HSIR).

Main Methods:

• Systematic literature search of PubMed and Embase up to July 2023.
• Inclusion of studies reporting PCOS prevalence in general populations and HSIR from comparable populations.
• Analysis of data from the United States, United Kingdom, and South Korea.

Main Results:

• Population-based studies reported PCOS prevalence ranging from 4% to 19.6% (US), ~8% (UK), and 4.9%-7% (South Korea).
• Health system records (HSIR) showed significantly lower PCOS prevalence: 0.2%-5.2% (US), 1.34% (UK), and 0.12%-4.3% (South Korea).
• While PCOS detection in HSIR improved over time, it did not reflect actual population prevalence.

Conclusions:

• A substantial underdiagnosis and/or underreporting of PCOS is evident when comparing HSIR to population-based data.
• Findings underscore an urgent need to enhance awareness of PCOS among healthcare professionals, payers, and the public.
• Improved diagnostic practices and recognition are crucial for managing PCOS effectively.