Panel recognizes need for a new name for PCOS

The common disorder now called “polycystic ovary syndrome” (PCOS) is imprecisely labeled, according to an independent panel convened by the National Institutes of Health (NIH).

The panel met in December 2012 in an evidence-based methodology workshop sponsored by the NIH Office of Disease Prevention and the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD).

As a part of its findings, the panel is urging further research to advance understanding and treatment of PCOS.

According to the panel, PCOS is a common hormone disorder that affects approximately 5 million women of reproductive age in the United States.

Women with PCOS may have impaired fertility and may have high levels of androgen hormones from the ovary and adrenal gland. Other organ systems that can be affected by PCOS include the brain, pancreas, liver, muscle, blood vasculature, and fat.

In addition to fertility impairment, a woman with PCOS may have ovulatory dysfunction, acne, obesity, hirsutism, thinning scalp hair, ovarian cysts (polycystic ovarian morphology), mental health problems, type 2 diabetes, high cholesterol, and high blood pressure.

“We believe the name ‘PCOS’ is a distraction and an impediment to progress,” the panel stated in a report of its findings. “It causes confusion and is a barrier to effective education of clinicians and communication with the public and research funders. The name focuses on a criterion-polycystic ovarian morphology-which is neither necessary nor sufficient to diagnose the syndrome.”

While the report asserts “it is time to expeditiously assign a name that reflects the complex metabolic, hypothalamic, pituitary, ovarian, and adrenal interactions that characterize the syndrome-and their reproductive implications,” the report does not include suggestions for more appropriate names. It says only, “the right name will enhance recognition of this major public health issue for women, educational outreach, ‘branding,’ and public relations and will assist in expanding research support.”

The panel also recommended improvements in the methods and criteria used to assess androgen excess, ovulatory dysfunction, and polycystic ovarian morphology.

Finally, panel members recommended establishing programs to improve awareness of the syndrome among the public and physicians.

National Institutes of Health. Evidence-based methodology workshop on polycystic ovary syndrome, December 3–5, 2012: executive summary. http://prevention.nih.gov/workshops/2012/pcos/docs/PCOS_Final_Statement.pdf. Accessed February 19, 2013.