Change the Name of “PCOS,” Panel Recommends

An independent panel convened by the NIH has concluded that the name “polycystic ovary syndrome (PCOS)” causes confusion and is a barrier to progress in the realms of both research and effective patient care.¹ This independent report, which is not a policy statement of the NIH or federal government, identifies future research and clinical priorities based on an assessment of all available scientific evidence related to PCOS and advocates that the name of the syndrome be changed.
   
The panel identified the name of the disorder as a major distraction and impediment to progress. The name itself focuses on polycystic ovarian morphology, which is neither necessary nor sufficient for a diagnosis, states the report. The advances that have been made in the understanding of PCOS are not at all reflected in the name of the syndrome, which is limiting. The panel writes that the right name for the syndrome, which has not been introduced, should reflect the syndrome’s myriad characteristics-metabolic, hypothalamic, pituitary, ovarian, and adrenal-and how they interact to affect reproductive health.
   
The broad diagnostic criteria of Rotterdam, which includes the classic NIH criteria and the Adrogen Excess-PCOS criteria, should continue to be used.^2-4 Also, the specific phenotype of the syndrome should always be identified and reported in all notes of clinical care and in all research studies (Table).¹ The panel also identified the need for improvement in the assessment methods and criteria for androgen excess, ovulatory dysfunction, and polycystic ovarian morphology.
   
The causes of PCOS, which affects approximately 5 million women in the United States, are not well understood.¹ Both genetic components and environmental factors have been shown to play important roles in the syndrome. However, well-designed, multiethnic studies are needed to help identify factors, such as obesity, that may exacerbate a genetic predisposition, urges the panel.
   
“Additional studies are needed to identify new treatments that address the most common symptoms women face, such as weight gain and difficulty becoming pregnant. We also need studies to determine a woman’s risk for cardiovascular and other complications and if treatment can reduce these risks,” said Pamela Ouyang, MD, a panel member and director of the Women’s Cardiovascular Health Center at Johns Hopkins Bayview Medical Center in Baltimore, Maryland.⁵

Pertinent Points:
- An independent panel has concluded that the name PCOS causes confusion and is a barrier to research.
- The name PCOS midleadingly focuses on ovarian cysts, a criterion that is neither necessary nor sufficient for a diagnosis of the syndrome.

References:

1. National Institutes of Health. Evidence-based methodology workshop on polycystic ovary syndrome, December 3-5, 2012. Available at: http://prevention.nih.gov/workshops/2012/pcos/docs/PCOS_Final_Statement.pdf. Accessed January 31, 2013.
2. Rotterdam ESHRE/ASRM-Sponsored PCOS Consensus Workshop Group. Revised 2003 consensus on diagnostic criteria and long-term health risks related to polycystic ovary syndrome (PCOS). Hum Reprod. 2004;19:41-47.
3. Zawadski JK, Dunaif A. Diagnostic criteria for polycystic ovary syndrome: towards a rational approach. In: Polycystic Ovary Syndrome (Current Issues in Endocrinology and Metabolism). Dunaif A, Givens JR, Haseltine FP, Merriam GE, Eds. Blackwell Scientific Inc: Boston; 1992:377.
4. Azziz R, Carmina E, Dewailly D, et al, for the Task Force on the Phenotype of the Polycystic Ovary Syndrome of The Androgen Excess and PCOS Society. The Androgen Excess and PCOS Society criteria for the polycystic ovary syndrome: the complete task force report. Fertil Steril. 2009;91:456-488.
5. National Institutes of Health. Panel recommends changing name of common disorder in women. Available at: http://www.nih.gov/news/health/jan2013/od-23.htm. Accessed January 31, 2013.