A medical condition which affects one in eight women needs a name change to help raise awareness.
A Monash University study found experts and those experiencing the potentially debilitating features of Polycystic Ovary Syndrome (PCOS) believed a name change would lead to greater awareness and improvements in care and outcomes.
Primary author Professor Helena Teede said there was a call to overcome the misleading implication that it was only an ovarian or gynaecological condition.
Professor Teede said PCOS carried risks of higher body weight, diabetes, heart disease, fertility issues and pregnancy complications, endometrial cancer, skin and hair changes including acne and excess facial hair, and psychological features including depression and anxiety, that were all exacerbated by higher weight.
“PCOS is the most common endocrine or hormonal condition in reproductive-aged women, yet its name does not reflect the broad range of health impacts,” she said.
“The focus on ovarian cysts, which are not true cysts but rather eggs or follicles that have stopped growing, overlooks the impacts of this multisystem disorder, leading to confusion, missed and delayed diagnosis, and inadequate information provision and care.”
Professor Teede said the 10-year study involved international online surveys engaging 7708 patients and diverse health professionals from six continents, alongside face-to-face workshops.
“The researchers sought perspectives on awareness of broad clinical features, the name, potential for renaming, advantages and disadvantages of a change, and potential alternative names.”
She said the study found 76 percent of health professionals and 86 percent of patients supported a name change, with field of potential names narrowed down and terms like “endocrine” and “metabolic’” among the most supported.
“A robust multi-step consensus process has been agreed to and is now underway with global engagement of health professional and patient societies.”
