Polycystic Ovary Syndrome: What's in a Name?

Abstract

Assigning names to new concepts in both general and medical knowledge is frequently problematic. Medical disorders have been primarily named after the first (or more often, the first to be recognized) individuals to describe its features (eg, Asperger’s syndrome), or perhaps after some clinical finding, now historic, and perhaps even tangential in nature (eg, systemic lupus erythematosus). Such names are frequently not intuitive and do not allow patients or their doctors to immediately understand what the disorder is all about without having to memorize the link first. But the increasing need for medical efficiency and the growing number of conditions today call for medical disorder names that are readily informative and almost instinctual in nature. And that is where we are with the disorder that we today know as the “polycystic ovary syndrome” (also known as polycystic ovarian syndrome) or PCOS, previously known as the “polycystic ovary disease” (PCOD), and even before that as the “Stein-Leventhal syndrome.” We now know that this disorder is extraordinarily common, affecting between 6 and 20% of reproductive-age women depending on the diagnostic criteria used (because there is more than one). It was originally named for the first individuals to report on symptoms associated with the syndrome (1), and then for the salient physical finding first observed (polycystic ovaries, a term coined by Stein and Leventhal). Recently, a National Institutes of Health (NIH) consensus meeting [NIH Office of Disease Prevention: Evidence-based Methodology Workshop on Polycystic Ovary Syndrome (PCOS), December 3–5, 2012] was convened to try and bring clarity to the field of study (2). Among their recommendations, members of the panel noted, “We believe the name ’PCOS’ is a distraction and an impediment to progress. It causes confusion and is a barrier to effective education of clinicians and communication with the public and research funders.” The panel further stated, “It is time to expeditiously assign a name that reflects the complex. . . interactions that characterize the syndrome—and their reproductive implications.” This investigator strongly agrees with this recommendation. As we would expect, there have been prior efforts at renaming the disorder, including the change from SteinLeventhal syndrome to PCOD and then to PCOS (because the disorder does not appear to be a specific disease). Lobo (3) proposed changing the name of the disorder to “hyperandrogenic chronic anovulation” to reflect the underlying and generally unique condition associated with the disorder—hyperandrogenism. More recently, Behera et al suggested changing the name of PCOS to “estrogenic ovulatory dysfunction” or “functional female hyperandrogenism” (4). Notably, both of these recommendations centered on naming the disorder around generalities concerning the condition itself, although paradoxically perhaps they were too general to be useful enough. And neither had the force of authority behind them—unlike the NIH panel recommendations. Name change is not new, of course. It has already occurred for a number of diseases or disorders, eg, mongolism to Down syndrome, manic depression to bipolar disorder, testicular feminization to androgen insensitivity syndrome, multiple personality to dissociative identity disorder. And a few have paradoxically changed their names to those of individuals, such as changing senile dementia to Alzheimer’s disease and leprosy to Hansen’s disease. Names have been changed for food products. The Chinese gooseberry was renamed kiwi because New Zealand