Polycystic Ovary Syndrome: Raising awareness and changing the name led by experts, health professionals and those with lived experience

(Press-News.org) Most experts and those experiencing the potentially debilitating features of Polycystic Ovary Syndrome (PCOS), which affects one in eight women, want greater awareness and a name change to improve care and outcomes.

A new Monash University-led research paper reveals those involved are keen to overcome the misleading implication that it is only an ovarian or gynaecological condition.

PCOS carries risks of higher body weight, diabetes, heart disease, fertility issues and pregnancy complications, endometrial cancer, skin and hair changes including acne and excess facial hair, and psychological features including depression and anxiety, that are all exacerbated by higher weight.

Published in the Lancet’s eClinicalMedicine, the Monash University-led global initiative involved international online surveys engaging 7708 patients and diverse health professionals from six continents, in 2015 and 2023, alongside face-to-face workshops.

The researchers sought perspectives on awareness of broad clinical features, the name, potential for renaming, advantages and disadvantages of a change, and potential alternative names.

The study demonstrates: 

A substantive improvement from 2015-2023 in awareness of PCOS and its diverse reproductive, cardiometabolic, skin and psychological features, with a positive impact from the Monash led International Guidelines (2018 and 2023), patient resources including the ASKPCOS App, and strong patient advocacy Overall 76% of health professionals and 86% of patients supported a name change, noting advantages (up to 90%), and minimal disadvantages (<27%). The field of potential names was narrowed with terms like 'endocrine' and 'metabolic' among the most supported A robust multi-step consensus process has been agreed to and is now underway with global engagement of health professional and patient societies Primary author Professor Helena Teede leads the Monash Centre for Health Research and Implementation (MCHRI) at Monash University and the NHMRC Centre for Research Excellence in Women’s Health in Reproductive Life (CRE-WHiRL). She is also an Endocrinologist at Monash Health.

These organisations are ranked as world leaders in PCOS and Monash Health hosts the only holistic public PCOS service nationally.

“PCOS is the most common endocrine or hormonal condition in reproductive-aged women, yet its name does not reflect the broad range of health impacts,” Professor Teede said. “The focus on ovarian cysts, which are not true cysts but rather eggs or follicles that have stopped growing, overlooks the impacts of this multisystem disorder, leading to confusion, missed and delayed diagnosis, and inadequate information provision and care. Research has also been limited to date.”

The NHMRC Centre for Research Excellence in Women’s Health in Reproductive Life (CRE-WHiRL), AE-PCOS (International Androgen Excess and Polycystic Ovary Syndrome Society), and UK consumer group Verity are  leading this international process to determine and implement a new name. The Australian patient group Polycystic Ovary Syndrome Association of Australia (POSAA) is engaged in this process.

“Over eight years, global data from patients and health professionals also showed that PCOS knowledge gaps reduced following the launch and widespread dissemination of two Monash-led International PCOS Guidelines in 2018 and 2023, extensive uptake of information resources across 195 countries and strong involvement of patient advocacy groups globally,” Professor Teede said. “This survey data also underpinned the global agreement to move to a new name.”

Dr Mahnaz Bahri Khomami, the Monash University co-lead on this work, said the current name was perceived as misleading and confusing, with consistent strong support for a name change, and advantages outweighed potential disadvantages. She also highlighted the extensive engagement with broad cultural groups across geographical regions to ensure any changes are culturally appropriate.

“We aim to more accurately frame PCOS beyond a reproductive disorder with a name change that can improve awareness, diagnosis and management without creating diagnostic inconsistency,” Dr Bahri Khomami said. “It should also enhance research funding, education and services recognising the broader features of the condition.”

Lorna Berry has PCOS and is working with the international team to rename the condition.

“The aim is to improve understanding for both GPs and people with PCOS, leading to early intervention and early diagnosis and better outcomes for women with PCOS across their lifetime,” Lorna said.

Lorna said the PCOS community welcomed the change, which was “a long-overdue shift toward respect, clarity, and meaningful progress”. “For decades, those of us living with this condition have had to ‘fight’ for diagnosis, and even after diagnosis, misinformation is abundant,” she said.

“The term ‘Polycystic Ovary Syndrome’ is misleading, medically outdated, and emotionally invalidating. As a lifelong condition, funding for research is needed, as well as patient-centred care, from a multi-disciplinary team, evolving throughout the lifetime.”

This paper involved experts from the Monash Centre for Health Research and Implementation (MCHRI), Monash Health, Verity (PCOS UK), Victoria University of Wellington in New Zealand, the

University of Pennsylvania in Philadelphia, the Polycystic Ovary Syndrome Association of Australia (POSAA), Erasmus University Medical Centre in The Netherlands, the University of Oulu in Finland, the University of New South Wales, and the University of Adelaide.

A new survey has opened for health professionals and patients in the multistep process to establish the new name.  Access it here: PCOS new name survey

Verity will host an international Q&A event for those with lived experience to provide more information on the name change process.  More information here. 

*The 2023 International Polycystic Ovary Syndrome (PCOS) Guideline and resources with over 1M views, and AskPCOS Patient App with over 95K users in 195 countries were both led by the Monash Centre for Health Research and Implementation (MCHRI) at Monash University.
 

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