A push to change the name of polycystic ovarian syndrome is gathering momentum, with key stakeholders getting closer to a consensus on what it should be called.
Leading Australian endocrinologist and co-director of the Melbourne-based Centre for Research Excellence in PCOS, Professor Helena Teede, said the majority of health professionals and consumers had agreed for many years that the current name was inappropriate.
“The name itself is not constructive, when trying to explain it to young women,” she told the limbic. “There might be no cysts on the ovaries, the treatments are not about their ovaries; it’s about their hormones. This is a very prevalent, very complex and very diverse condition.
“It’s (the name) an absolute barrier to progress.”
She revealed that, after some six years of discussion, health care professionals were aligning around a new name for the condition – metabolic reproductive syndrome.
There was still some way to go, however, she said, and discussions needed to continue with researchers who were concerned about losing historical track of PCOS, and with women who needed more information about the implications of the name change.
“I don’t believe we’re at the point where we’re changing the name right now but we’re on the journey,” she said. “We’re on a journey, we’re taking health professionals, we’re taking health interest groups with us and we’re taking consumers.”
Mainstream media has been abuzz with claims the name had already been changed, following discussion at the American Diabetes Association’s Scientific Sessions in New Orleans in June.
Professor Teede, who also heads Monash Health’s Diabetes and Vascular Medicine Services across five hospitals and multiple ambulatory sites, was a speaker at this forum.
“It is time to assign a new name that actually reflects the complex features of the condition,” she said during her presentation. “The new name needs to enhance the recognition of this major public health issue … and can then lead to greater educational outreach and better public relations.”
Professor Teede said this had been misinterpreted widely by lay media that the name change was a fait accompli, when the reality was still some time away.
She believes it will take the next one-two years to bring about an international consensus, and then she hoped this would be supported by international health journals to publish and promote the new terminology.
There was also more consultation and engagement needed with women and consumers.
“There’s a great deal of interest among women and recognition that there is a problem with the name,” she said. “It’s been a fairly long journey, the vision is to improve health outcomes for women with the condition and I think we are making good progress.”
The Centre for Research Excellence in PCOS is gearing up to host the its second annual meeting in November in Lorne Victoria, which will also coincide with the 14th Annual Meeting of the Androgen Excess and PCOS Society. Professor Teede is president-elect of this organisation.
She said most of the world’s top clinicians and researchers in PCOS would be at this meeting, and she had no doubt the name change would be an important topic for discussion.