SAT365 Prevalence of Polycystic Ovary Syndrome (PCOS) in Health System and Insurer Records vs. the Prevalence in the Population: Evidence for the Significant Underdiagnosis and Undertreatment of PCOS
Authors: Hatoum Sana , Amiri Mina , Hopkins Dawnkimberly , Buyalos Richard P , Bril Fernando , Azziz Ricardo 
Published: October 2023

Disclosure: S. Hatoum: None. M. Amiri: None. D. Hopkins: None. R.P. Buyalos: Employee; Self; Fertility & Surgical Associates of California. F. Bril: None. R. Azziz: Advisory Board Member; Self; Arora Forge. Consulting Fee; Self; Rani Therapeutics, Fortress Biotech, Spruce Biosciences, Core Access Surgical Technologies. Grant Recipient; Self; Foundation for Research and Education Excellence, Ferring Pharmaceuticals. Stock Owner; Self; Martin Imaging.

Background: Polycystic Ovary Syndrome (PCOS) is a common disease, a complex genetic trait, and the most common endocrine disorder of women, clinically evident in 5-15% of all reproductive-aged women globally. PCOS is associated with reproductive, cardio-metabolic, dermatologic, and mental-health morbidities, with an estimated healthcare-associated economic burden exceeding $15 billion yearly for the USA alone. Despite its high prevalence and broad range of associated morbidities, women with PCOS often have difficulty finding appropriate health care and the disorder is frequently underdiagnosed and/or undertreated.Objective: We aimed to determine the extent of underdiagnosis/undertreatment of PCOS, by comparing the prevalence of PCOS reported in health system and insurer records (HSIR) with the populational prevalence of PCOS.Materials and methods: We performed a systematic review of PubMed and Embase through December 2022 to identify studies on PCOS prevalence in an unselected population. Results: Of 6201 studies retrieved from databases and other sources, 6 studies reported the prevalence of PCOS in HSIR and two studies reported the prevalence of PCOS in the population. HSIR data included records from the Thomson Reuters MarketScan Commercial databases, the Department of Defense Military Health Systems DataMart, Louisiana Medicaid, the Kaiser Permanente Southern California Children’s Health Study, and Kaiser Permanente Northern California. In the USA, the prevalence of diagnosed PCOS in HSIR ranged from 0.2% to 2.2%. In contrast, the prevalence of PCOS in the general unselected population ranged from 4.0% to 6.6% using the NIH 1990 criteria. Overall, the prevalence of PCOS in HSIR is 2 to 33-times less than the prevalence of PCOS in the U.S. population. Conclusion: The prevalence of PCOS in health system and insurer records is 2 to 33-times less than the prevalence of PCOS in the population; highlighting the significant underdiagnosis and/or undertreatment of PCOS patients in the U.S. The underlying causes for the paucity of PCOS in these records are currently unknown but may reflect a reluctance of patients to seek medical care, a lack of understanding of affected women regarding the significant morbidity of the disorder, and/or a lack of clinical awareness among healthcare providers. Either way, these data strongly suggest the need for enhanced education of the general population and healthcare providers regarding this highly prevalent and morbid disorder.

Presentation Date: Saturday, June 17, 2023