PCOS, or polycystic ovary syndrome, is a medical condition that affects up to five million women in the United States alone. The condition can cause pain and infertility, but PCOS affects more than the ovaries. According to a report published by a panel from the National Institutes of Health (NIH) the name PCOS needs to be changed to better reflect the nature of the medical condition and additional research is needed to better understand and treat the medical issue. The report was published on the NIH website.

The report was presented at a three-day workshop held by the NIH. The workshop aimed to provide current information on PCOS while outlining changes that needed to be addressed by the medical committee. Among the suggested changes was a name-change for the syndrome. According to the panel, ovarian cysts may be present in patients with PCOS, but the condition can exist when ovarian cysts are not present – thus the name does not represent current available data about the syndrome. No new name suggestions were presented.

Another issue of order at the workshop was the diagnostic criterion. Currently, three different diagnostic models are used to confirm or diagnose PCOS. The three criterions are the Androgen Excess and PCOS Society, NIH and Rotterdam classification systems. The NIH panel suggests using the Rotterdam classification because it represents a broader system with woman-specific phenotyping. Changes to the Rotterdam classification system would include more precise definitions of classification terms and established normal range figures across populations and age groups.

It is estimated that the US healthcare system spends more than $4 billion every year diagnosing and treating PCOS. Establishing one clear set of diagnostic criterion and classification, changing the name to reflect the wide spectrum of symptoms and promoting research is extremely important to the health and well-being of women across the world.

The panel was quick to support education models that partnered patient with the doctor. According to one panel member, “Creating multidisciplinary teams - that engage women and their health care providers - is critical to promoting patient education, increasing public awareness, and successfully managing the syndrome.”

The NIH delivered information at the workshop as a means of discussion only. The information provided in the report does not indicate a statement of policy change by the NIH.

Source: NIH Office of Disease Prevention Evidence-Based Methodology Workshop on Polycystic Ovary Syndrome (PCOS). December 3-5, 2012.

  • National Institutes of Health