PCOS to be renamed as experts say 'inaccurate' label limits access to care

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By Ella Pickover, PA Media

Doctors have called for polycystic ovary syndrome to be renamed to reflect its “multi-system pathophysiology” and reduce delayed diagnosis.

PCOS affects about one in eight women, but experts said the current name is inaccuate and creates misunderstanding about the long term impacts of the condition that can delay and fragment care.

The condition is a complex long-term hormonal or endocrine disorder, they said.

PCOS should now be referred to as polyendocrine metabolic ovarian syndrome (PMOS), according to a new consensus statement published in The Lancet.

NHS officials have said that the recommendation will be “carefully considered”.

Experts said the condition affects hormones, with an impact on weight, skin, metabolic and mental health and the reproductive system.

The paper, led by experts from Monash University in Australia, says the term PCOS is “inaccurate”.

The term implies “pathological ovarian cysts, obscuring diverse endocrine and metabolic features, and contributing to delayed diagnosis, fragmented care, and stigma, while curtailing research and policy framing” ,the authors said.

'Landmark moment'

The name change comes after engagement with academics, patient and clinical groups as well as global surveys of thousands of patients with the condition.

The new name reflects the condition’s “multi-system pathophysiology” the authors conclude.

“Accuracy was improved by omitting cysts and by capturing endocrine, metabolic, and ovarian dysfunction.”

Professor Helena Teede, director of the Monash Centre for Health Research and Implementation and an endocrinologist at Monash Health, said: “What we now know is that there is actually no increase in abnormal cysts on the ovary and the diverse features of the condition were often unappreciated.

“It was heart-breaking to see the delayed diagnosis, limited awareness and inadequate care afforded those affected by this neglected condition.

“A name change was the next critical step towards recognition and improvement in the long term impacts of this condition.

“This is a landmark moment that will lead to desperately-needed worldwide advancements in clinical practice and research.”

Rachel Morman, chairwoman of Verity (PCOS UK), said: “This shift will reframe the conversation and demand that it is taken as seriously as the long-term, complex health condition it is."

An NHS England spokesperson said: “We routinely review and update content on the NHS website to ensure it reflects the latest clinical advice and will carefully consider these recommendations.

“The NHS will also continue our work to improve women’s healthcare, including for this important group, which involves giving women more choice over their care, bringing down waiting times, and delivering more care in communities.”

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