Monash-led research raises urgent need to redefine PCOS

Monash-led research raises urgent need to redefine PCOS

Most experts and those who experience 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.

New research led by Monash University shows those involved want to overcome the misleading implication that it is just an ovarian or gynecological condition.

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

Published in theLancets eclinical medicineThe global initiative, led by Monash University, included international online surveys, alongside face-to-face workshops, administered to 7,708 patients and diverse healthcare professionals from six continents in 2015 and 2023.

Researchers sought perspectives on awareness of broad clinical features, name, renaming, advantages and disadvantages of change, and potential alternative names.

The study shows:

• Eine wesentliche Verbesserung von 2015 bis 2023 im Bewusstsein für PCOS und der vielfältigen reproduktiven, kardiometabolischen, Haut- und psychologischen Merkmale mit positiv
• Insgesamt 76% der Angehörigen der Gesundheitsberufe und 86% der Patienten stützten eine Namensänderung, wobei die Vorteile (bis zu 90%) und minimale Nachteile (<27%) feststellten.
• Das Feld potenzieller Namen wurde mit Begriffen wie „endokrin“ und „metabolisch“ unter den am häufigsten unterstützten
• Ein robuster mehrstufiger Konsensprozess wurde vereinbart und ist nun mit dem globalen Engagement von Gesundheitsberufen und Patientengesellschaften im Gange

Lead author Professor Helena Teede leads the Monash Center for Health Research and Implementation (MCHRI) at Monash University and the NHMRC Center for Research Excellence in Women's Reproductive Health (CRE-Whirl). She is also an endocrinologist at Monash Health.

These organizations 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 disorder in women of reproductive age, but its name does not reflect the wide range of health effects,” Professor Teede said. "The focus on ovarian cysts, which are not true cysts but rather eggs or follicles that have stopped growing, overlooks the impact of this multisystem disorder, leading to confusion, missed and delayed diagnosis, and inadequate information prevention and care. Research has also been limited to date."

The NHMRC Center for Research in Women's Reproductive Health (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 involved in this process.

"Over eight years, global data from patients and healthcare professionals also showed that PCOS knowledge gaps are narrowing following the introduction and widespread dissemination of two Monash-led international PCOS guidelines in 2018 and 2023, extensive uptake of information resources in 195 countries and strong participation in patient advocacy groups globally. "This survey data also has the global agreement to move to a new name."

Dr. Monash University co-leader Mahnaz Bahri Khomami said the current name was perceived as misleading and confusing, with consistently strong support for a name change outweighing any potential downsides. She also emphasized broad engagement with broad cultural groups across geographic regions to ensure changes are culturally appropriate.

“We want to more accurately agree PCOs on a reproductive disorder with a name change that can improve awareness, diagnosis and management without creating diagnostic inconsistency,” said Dr. Bahri Khomami. “It should also improve research funding, education and services that recognize the broader characteristics of the condition.”

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

“The aim is to increase understanding of both GPS and people with PCOS, leading to early intervention and early diagnosis and better outcomes for women with PCOS throughout their lives,” Lorna said.

Lorna said the PCOS community welcomed the change, which was "a long-term shift towards 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 abounds,” she said.

"The term 'polycystic ovary syndrome' is misleading, medically outdated and emotionally invalid. As a lifelong condition, research funding is required as well as patient-centered care from a multidisciplinary team that develops throughout life."

This paper involved experts from the Monash Center 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 Center in The Netherlands, the University of Oulu in Finland, the University of New South Wales, and the University of Adelaide.

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