Polycystic ovary syndrome perspectives from patients and health professionals on clinical features, current name, and renaming: a longitudinal international online survey

Abstract

Summary

Background: Polycystic ovary syndrome (PCOS) has diverse features. However, the name reflects only ovarian aspects, overlooking broader features. This study aimed to investigate international stakeholder perspectives on PCOS.

Methods: We conducted international longitudinal anonymous online surveys and face-to-face workshops with individuals with PCOS and health professionals between 2015 and 2023, across six continents, seeking perspectives on clinical features of PCOS, the current name, the potential for renaming, the advantages and disadvantages of a name change, and possible alternative names.

Findings: Results from 7708 survey respondents in 2015 and post publication of international guidelines in 2023, significantly improved recognition of the reproductive, cardiometabolic, hormonal, and psychological features of PCOS (p < 0·001). However, gaps remain, with ≥20% of patients and/or health professionals not recognising associations between PCOS and non-alcoholic fatty liver disease, pregnancy complications, cardiovascular risk factors, and endometrial cancer. Aligned to the breadth of PCOS, in the 2023 survey, a potential name change was explored with 85·6% of patients and 76·1% of health professionals agreeing that the name should be changed. Both groups agreed that a name change presents advantages with 59–90% agreeing with advantages and fewer than 27% agreeing with disadvantages. Terms such as ‘endocrine’ and ‘metabolic’ received the highest support in 2015 and 2023 for inclusion in a new name among both patients (78·5 and 86·2%) and health professionals (84·6 and 79·6%). Overall, 84% committed to a consensus-driven name change process on voting at a 2023 workshop.

Interpretation: Widespread international engagement in 2015 showed major knowledge gaps on broad PCOS features, with follow-up in 2023 showing significant improvement after two international guidelines, widespread dissemination and advocacy group outreach. Stakeholders highlighted that the current name does not adequately reflect broad PCOS features and is confusing. They endorsed a name change, with perceived advantages outweighing potential disadvantages. This culminated in a commitment to a global consensus process to determine and implement a new name, alongside extensive education efforts, both of which are now underway.

Funding: The Australian National Health and Medical Research Council (NHMRC) funded Centre for Research Excellence in Women’s Health in Reproductive Life (CRE-WHiRL) [APP#1171592].