What PCOS’s name change means for healthcare

PCOS just got a makeover.

A multinational coalition of medical societies voted in May to change the name of polycystic ovary syndrome—a condition that affects 1 in 8 women across the globe—to polyendocrine metabolic ovarian syndrome (PMOS). Experts say the new name is intended to reflect a more accurate picture of what the condition entails, and is expected to increase research funding for the diagnosis and potentially improve patient care.

The primary inaccuracy in the former name, PCOS, is that there are actually no cysts in patients with the diagnosis, Melanie Cree, a professor of pediatrics-endocrinology at the University of Colorado Anschutz medical school, told Healthcare Brew. Instead, there are antral follicles, which are half-matured eggs. The follicles are round and filled with fluid, similar to a cyst, but actual ovarian cysts are much larger, she explained.

“There are no cysts in PCOS—none,” Cree said. “The name was leading to overdiagnosis in inappropriate patients and underdiagnosis in appropriate patients, and misdiagnosis can lead to patient harm.”

A long push for change. The push for the name change began at a National Institutes of Health (NIH) meeting in 2012, when it became more widely known that the condition didn’t actually involve cysts, according to Cree.

Helena Teede, director of Monash Centre for Health Research Implementation at Monash University in Melbourne, Australia, took action to create a leadership structure for the name change, with the help of Verity, a charity for patients with PMOS in England.

A group of medical societies began sending out surveys to patients asking them which words they liked to describe the condition and which words they didn’t, Cree said. Then the group would come together to review the answers and workshop potential names.

Getting the word “metabolic” in the new name was very important, as it reflects that comorbidities, such as Type 2 diabetes, are the primary drivers affecting patients’ quality of life aside from their potential desire to have children, Cree explained.

Including Cree, representatives from 56 medical societies and organizations around the world voted on the final name change.

Consequences of ‘PCOS’. Because having cysts were part of the diagnostic criteria for so long, some patients with cysts were diagnosed with the condition when they didn’t actually have it, Cree explained. And some patients without cysts didn’t get a diagnosis because of the misconception that they had to have them in order to have PCOS.

The name has also led to less research funding because of how it was classified, according to Cree. Because it was considered a reproductive disorder, the NIH had classified it under the National Institute for Child Health and Human Development (NICHD), which is one of the lowest-funded institutes.

In her experience, it was “incredibly difficult to get funding from the NICHD,” Cree said. “If you went to any other institute, as soon as they saw the word ‘PCOS,’ they’d say, ‘Nope, you have to go to NICHD,’” she said.

Now, the condition has been reclassified under multiple categories, including endocrine, dermatologic, and psychologic health. That opens research on the condition up to receive funding from more NIH institutes, according to Cree.

She added she hopes the name change will prompt providers to conduct more frequent metabolic screenings on their patients, so they can access medicine like GLP-1s that can help stave off comorbidities. 

“If we can get people to screen consistently for metabolic disease, the treatment and the treatment options completely change,” she said.

Responding to criticism. The name change drew considerable social media discourse, with some criticizing the choice to leave the word “ovarian” in the name rather than “reproductive,” given the goal of shifting the perception of PMOS away from being thought of as an ovarian disorder.

However, this was an intentional choice by the medical societies, and was made to protect patients affected by the condition globally, Cree said.

“We found out that in certain countries, a woman’s worth is tied to her ability to have children, and if we use the word ‘reproductive,’ we would actually be endangering women’s lives,” she said. “This is a global name change, and it has to be sensitive to issues that women face globally.”