Australian endocrinologists have led a major global process to rename a condition affecting 170 million women worldwide.
Professor Helena Teede
Polycystic Ovary Syndrome (PCOS) will now be known as Polyendocrine Metabolic Ovarian Syndrome (PMOS) in a move Monash Health’s Professor Helena Teede says finally accurately reflects the complexity of the condition.
“Make no mistake, this is a landmark moment that will lead to desperately-needed worldwide advancements in clinical practice and research,” Professor Teede said ahead of announcing the change at 28th European Congress of Endocrinology in Prague on May 12.
Patient groups and clinicians have long argued the term PCOS was inaccurate and misleading, not least because it implied the presence of “pathological ovarian cysts”, which are not a feature of the condition.
“PCOS encompasses diverse endocrine, metabolic, reproductive, psychological, and dermatological features. The current name reflects only one organ and fails to capture the disorder’s multisystem nature,” the authors of a paper on the consensus process, published in The Lancet, explained [link here].
What’s in a rename?
In The Lancet, Professor Teague and colleagues lay out exactly what it takes to overhaul the definition and name of a condition affecting so many patients worldwide.
Funding for the rename project was first secured in 2024, followed by the engagement of 56 academic, patient and clinical organisations.
Surveys of more than 14,000 patients with PCOS and clinicians from across the globe then proceeded, followed by Delphi methods and workshops to narrow down the most appropriate new title.
Then a marketing and communication analysis took place to discuss the feasability of the rebrand and how the new title would be communicated to the public.
Once Polyendocrine Metabolic Ovarian Syndrome emerged as the winning name, then it was a matter of mapping the eight stage process to get it into practice – from publishing the news in The Lancet this month, right through to plans to embed the new title in the next edition of international guidelines, which will be updated in 2028.
Overhauling harmful wording
The lengthy survey processes helped clarify exactly what endocrinologists and patients thought was missing in the original PCOS branding.
“Preferred terms were polyendocrine, metabolic, and ovarian, reflecting the condition’s multisystem pathophysiology, and polyendocrine metabolic ovarian syndrome was the consensus new name,” the change consortium wrote in The Lancet.
“Accuracy was improved by omitting cysts and by capturing endocrine, metabolic, and ovarian dysfunction.”
The focus on reproduction in the name PCOS reinforced stigma, patients reported, while confusion about the diverse features of the condition was delaying diagnosis, survey and Delphi processes revealed.
A global reset
Polyendocrine Metabolic Ovarian Syndrome has only just had its debut, but the hope is that the fresh title will change the lives of millions of patients for decades to come.
A three-year transition period will now begin, including a co-ordinated education effort to inform health professionals, researchers and patients about the change ahead of the 2028 guidelines update.
“The agreed principles of the new name included patient benefit, scientific accuracy, ease of communication, avoidance of stigma, cultural appropriateness and accompanying implementation,” Professor Teede said.
Previous global studies have suggested up to 70% of patients remain undiagnosed, with the old name creating confusion and failing to understand the condition as a purely gynaecological disorder.
The hope is that PMOS will improve clarity and understanding and leave fewer patients languishing without a diagnosis.
“The agreed principles of the new name included patient benefit, scientific accuracy, ease of communication, avoidance of stigma, cultural appropriateness and accompanying implementation,” Professor Teede said.