The name ‘polycystic ovary syndrome’ is a barrier to research, diagnosis and evidence-based care.
PCOS by any other name may yield more research dollars and a wider understanding of the relatively common condition, which is now recognised as having broad metabolic, reproductive, psychological and dermatological manifestations.
An estimated 70% of Australians with PCOS remain undiagnosed.
According to a new paper led by Monash Centre for Health Research Implementation director Professor Helena Teede, the name “polycystic ovary syndrome” has contributed to the misconception that it is primarily a gynaecological condition.
This doesn’t just affect public awareness of PCOS; it reduces its funding.
“For example, in the US … the National Institutes of Health only fund research on PCOS under the very, very small bucket of [funding set aside for] … women’s and children’s health,” Professor Teede told The Medical Republic.
“It’s a really small bucket of funding, and it has to cover all of children’s [health], all of pregnancy, all of infertility and all of endometriosis.
“The problem with that is that [PCOS] causes heart disease, it causes diabetes, it causes mental health [issues] – but it cannot be funded by mental health grants or heart disease [grants] or diabetes grants because polycystic ovary syndrome is stuck in the gynaecology and women’s health bucket.”
Professor Teede’s new paper, which was published in The Lancet Discovery Science this week, looked at the results of two comprehensive, international, large-scale surveys capturing perspectives from more than 7500 participants.
One survey was conducted in 2015 and the other was conducted in 2023.
Related
“There was widespread agreement over time that the current name is misleading, contributes to confusion, and should be changed to better represent the broad health implications of the condition,” Professor Teede and colleagues wrote.
This is not the first attempt to change the condition’s name – efforts to rename PCOS been ongoing since 1995 and have tended to suffer from a lack of stakeholder engagement and a failure to identify a suitable new name.
But there is reason to hope that, this time, it will be successful.
Recent years have seen two international guidelines on PCOS published, leading to better awareness of PCOS features across endocrine, reproductive, metabolic, dermatological, and psychological domains.
“We’ve done quite a lot of work around the guidelines we’ve written, we’ve led a research roadmap [looking at] what we should all be doing next in research and the next obvious thing was to get everybody together and go, ‘we just need to fix this name’,” Professor Teede said.
“It is a fundamental roadblock that we just have to get fixed, and it needs global coordination.”
There are two directions that a name change could take.
The first is a more generic term, similar to how “asthma” and “diabetes” refer to specific diseases but don’t name a body part or system.
The second is a more accurate descriptive name which would acknowledge the endocrine or metabolic aspects of the syndrome.
In terms of how GPs will be affected on a practical level, Professor Teede said she hoped that increased research and awareness would bring about better undergraduate and postgraduate education on PCOS.
“The message is that [PCOS] is very common, it’s under-diagnosed and it’s not well managed because of a historical lack of research, lack of guidelines and lack of education,” she said.
A survey to suggest a new name for PCOS is now open.
