SAT350 PCOS and the Diagnostic Experience: Results From a Diverse United States Cohort Study
Authors: Huddleston Heather , Milani Alex , Blank Rachel 
Published: October 2023

Disclosure: H. Huddleston: Advisory Board Member; Self; Allara. A. Milani: Research Investigator; Self; Allara. R. Blank: Owner/Co-Owner; Self; Allara.

Background: Polycystic Ovary Syndrome (PCOS) is a multi-faceted and chronic condition. Appropriate diagnosis and medical management may have important benefits for long-term health and well-being. In 2017, an International study demonstrated wide-spread dissatisfaction with the PCOS diagnostic experience[1]. Whether, and for whom, a similar level of dissatisfaction is present in a diverse United States population is unclear. Objective: Investigate the diagnostic experience of individuals in the United States with PCOS and to identify if differences exist in the diagnostic experience satisfaction and/or medical management according to key demographic factors. Methods: Cross sectional study using an online questionnaire. Subjects were recruited to participate using social media advertising. For all analyses, we considered subjects who reported a diagnosis by a provider. Main Outcome Measures: Satisfaction with the PCOS diagnostic and treatment experience. Results: Of 1103 respondents, 1053 received a PCOS diagnosis from a medical provider, with self-identification as: White (56.9%), Black (12.1%), Hispanic (19.2%), Asian (7.2%), Middle Eastern (1.7%) and Other (2.9%). The mean (SD) age for symptom onset was 18.0 (+/-5.3 years), and the mean time experiencing symptoms prior to a diagnosis was 5.1 (+/-5.3) years, at a mean age of 23.0 (+/- 5.9) years. Almost half (47.1%) of individuals reported seeing 3 or more health professionals prior to a diagnosis being established. Only 26.7% were somewhat or very satisfied with the diagnostic experience, and satisfaction was inversely correlated with time required and number of providers seen (p&lt;.001). We did not observe differences by race, education or income in diagnostic experience parameters. Participants reported low satisfaction with care since diagnosis (67% dissatisfied or very dissatisfied). White and Black participants were more likely to report dissatisfaction with lifestyle (p=.04) and long -erm health information compared to Asian and Middle Eastern counterparts (p&lt;.001). When asked about PCOS care over the past three years, 46% of respondents reported seeing three or more providers to manage PCOS. Lower income and education levels, and Black and Hispanic race independently associated with a lower odds of seeing three or more providers (OR 0.53 (95 CI: 0.36, 0.79 p=.002); OR 0.72 (0.52, 0.99 p =.05). Conclusions: Many with PCOS experienced an extended period of time with symptoms prior to diagnosis and/or saw multiple providers prior to a diagnosis being established. There may be sociodemographic disparities in accessing appropriate care for the wide range of PCOS symptoms.

1. Gibson-Helm M, Teede H, Dunaif A, Dokras A: Delayed Diagnosis and a Lack of Information Associated With Dissatisfaction in Women With Polycystic Ovary Syndrome. J Clin Endocrinol Metab 2017, 102(2):604-612.

Presentation Date: Saturday, June 17, 2023