Meeting News CoveragePerspective

‘Metabolic reproductive syndrome’ proposed as new name for PCOS

NEW ORLEANS — Polycystic ovary syndrome will be renamed to “metabolic reproductive syndrome” as a result of debates and surveys of women affected by the condition and the health professionals who support their care, according to a speaker here.

“It is time to assign a new name that actually reflects the complex features of the condition,” Helena J. Teede, MBBS, FRACP, PhD, professor and head of the Women’s Public Health Research Program at Monash University in Victoria, Australia, said during her presentation. “The new name needs to enhance the recognition of this major public health issue ... and can then lead to greater educational outreach and better public relations.”

Early efforts on a name change included an open debate in 2012 at the International Congress of Endocrinology in which 72% of about 3,500 participants thought that the name PCOS should be changed. Despite the majority, efforts failed because the participants could not decide on a name.

A 2012 NIH panel workshop, which convened to present and discuss information on PCOS, was the catalyst for the name change. The panel resulted in the recommendation that the name PCOS be changed with a preference for metabolic reproductive syndrome, but the panel stopped short of recommending a specific name in its report.

“[The name PCOS] is a distraction, an impediment to progress,” the NIH panel reported. “It causes confusion and is a barrier to effective education and communication. It focuses on ... polycystic ovarian morphology, which is neither necessary nor sufficient to diagnose the condition.”

After the NIH panel, Teede and other health professional and consumer advocacy leaders joined to develop and conduct surveys of women with PCOS and physicians, as well as to facilitate consumer studies and international panels, to determine whether the name should be changed and, if so, to what new name.

The name metabolic reproductive syndrome was then confirmed as preferred by the majority of surveyed patients and health care professionals internationally.

The 1,400 women with PCOS who were surveyed varied in ages and were mostly from the United States and Europe. A majority had the syndrome for more than 5 years.

Only 14 of the surveyed women agreed that the name PCOS should be retained. Additionally, there was consensus that the name PCOS was confusing and should be changed, and increased education for patients and health care providers in combination with a name change is needed, according to the survey results.

The 1,655 surveyed health care professionals — surveyed from around the world — agreed with the surveyed women that the name PCOS should be changed because it is confusing and can be misleading.

Both the women and the physicians agreed on the name metabolic reproductive syndrome as being the most strongly supported.

The process of changing the name will first include a publication of the international position statement and of the consultation and survey results. Then, Teede will work with the editors of women’s health journals to promote using the new terminology. They will also be updating the international guideline with the new name and work to incorporate the change in the ICD code. – by Cassie Homer

Reference:

Teede H. 3-CE-SY17. Presented at: American Diabetes Association’s Scientific Sessions; June 10-14, 2016; New Orleans.

Disclosure: Teede reports no relevant financial disclosures.

NEW ORLEANS — Polycystic ovary syndrome will be renamed to “metabolic reproductive syndrome” as a result of debates and surveys of women affected by the condition and the health professionals who support their care, according to a speaker here.

“It is time to assign a new name that actually reflects the complex features of the condition,” Helena J. Teede, MBBS, FRACP, PhD, professor and head of the Women’s Public Health Research Program at Monash University in Victoria, Australia, said during her presentation. “The new name needs to enhance the recognition of this major public health issue ... and can then lead to greater educational outreach and better public relations.”

Early efforts on a name change included an open debate in 2012 at the International Congress of Endocrinology in which 72% of about 3,500 participants thought that the name PCOS should be changed. Despite the majority, efforts failed because the participants could not decide on a name.

A 2012 NIH panel workshop, which convened to present and discuss information on PCOS, was the catalyst for the name change. The panel resulted in the recommendation that the name PCOS be changed with a preference for metabolic reproductive syndrome, but the panel stopped short of recommending a specific name in its report.

“[The name PCOS] is a distraction, an impediment to progress,” the NIH panel reported. “It causes confusion and is a barrier to effective education and communication. It focuses on ... polycystic ovarian morphology, which is neither necessary nor sufficient to diagnose the condition.”

After the NIH panel, Teede and other health professional and consumer advocacy leaders joined to develop and conduct surveys of women with PCOS and physicians, as well as to facilitate consumer studies and international panels, to determine whether the name should be changed and, if so, to what new name.

The name metabolic reproductive syndrome was then confirmed as preferred by the majority of surveyed patients and health care professionals internationally.

The 1,400 women with PCOS who were surveyed varied in ages and were mostly from the United States and Europe. A majority had the syndrome for more than 5 years.

Only 14 of the surveyed women agreed that the name PCOS should be retained. Additionally, there was consensus that the name PCOS was confusing and should be changed, and increased education for patients and health care providers in combination with a name change is needed, according to the survey results.

The 1,655 surveyed health care professionals — surveyed from around the world — agreed with the surveyed women that the name PCOS should be changed because it is confusing and can be misleading.

Both the women and the physicians agreed on the name metabolic reproductive syndrome as being the most strongly supported.

The process of changing the name will first include a publication of the international position statement and of the consultation and survey results. Then, Teede will work with the editors of women’s health journals to promote using the new terminology. They will also be updating the international guideline with the new name and work to incorporate the change in the ICD code. – by Cassie Homer

Reference:

Teede H. 3-CE-SY17. Presented at: American Diabetes Association’s Scientific Sessions; June 10-14, 2016; New Orleans.

Disclosure: Teede reports no relevant financial disclosures.

    Perspective
    Katherine Sherif

    Katherine Sherif

    PCOS investigators are frustrated by the paucity of funding for a condition that doesn’t seem to have a home. As an internist who has been treating women with PCOS for over 20 years, I am frustrated by the lack of early recognition of and aggressive treatment for PCOS. By the time I see a woman with PCOS, she may have already developed fatty liver, hypertriglyceridemia and diabetes. The message many of these women have received is “Take the birth control pill and come back when you want to conceive.”

    The widespread lack of knowledge about the metabolic problems of PCOS stems from a systemic problem in medical culture: the separation of women’s reproductive health from other fields of medicine and the notion that “sex hormones” affect only reproductive organs and not every other organ system in the body. In that context, the name “polycystic ovary syndrome” made sense before we understood insulin resistance.

    I would have welcomed a new name in the ‘90s. However, PCOS has gained so much attention and recognition that it might be confusing to change the name again. Thanks to the internet, tens of thousands of women belong to dozens of advocacy and support groups using the name “PCOS.” It would be onerous for these nonprofits to spend money changing the name.

    PCOS is a paradigm of a women’s health issue; it reflects the intersection between reproductive and metabolic physiology. As more clinicians are educated about PCOS, they recognize that PCOS confers a significant metabolic risk. More importantly, PCOS demonstrates that we cannot completely understand physiologic processes unless we consider the role of the so-called sex hormones. Instead of changing the name “PCOS,” maybe funders need to change and to recognize that research areas don’t fall neatly into organ systems.

    • Katherine Sherif, MD
    • Professor, Department of Medicine Sidney Kimmel Medical College Thomas Jefferson University Director, Jefferson Women's Primary Care Philadelphia, PA

    Disclosures: Sherif reports no relevant financial disclosures.

    See more from American Diabetes Association Scientific Sessions