S P E C I A L
F E A T U R E
C o m m e n t a r y
Polycystic Ovary Syndrome: What’s in a Name? Ricardo Azziz Department of Obstetrics and Gynecology and Department of Medicine, Medical College of Georgia, Georgia Regents University, Augusta, Georgia 30912
What’s in a Name? ssigning 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
A
ISSN Print 0021-972X ISSN Online 1945-7197 Printed in U.S.A. Copyright © 2014 by the Endocrine Society Received November 4, 2013. Accepted January 16, 2014. First Published Online February 3, 2014
1142
jcem.endojournals.org
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 Abbreviations: PCOS, polycystic ovary syndrome; PCOM, polycystic-appearing ovarian morphology.
J Clin Endocrinol Metab, April 2014, 99(4):1142–1145
doi: 10.1210/jc.2013-3996
The Endocrine Society. Downloaded from press.endocrine.org by [${individualUser.displayName}] on 27 April 2014. at 06:21 For personal use only. No other uses without permission. . All rights reserved.
doi: 10.1210/jc.2013-3996
farmers wanted to sell it. Although the fruit originated in the Yangtzee Valley in northern China, the strategy has been pretty successful because New Zealand is now one of the largest exporters of kiwifruit to the United States. Also in the United States, where we can be squeamish about what we eat, dolphinfish were renamed mahi-mahi because Americans don’t want to eat dolphins—although dolphinfish are not at all mammals. And the Patagonian toothfish was renamed Chilean sea bass, opening a whole new market in the United States for this fish, a naming strategy so successful that the species has since been overfished. Corporations have changed their names as well; eg, Blue Ribbon Sports to Nike, Standard Oil Company to Exxon Mobile, and Jerry’s Guide to the World Wide Web to Yahoo. In the rapidly changed world of business, however, not all changes were for the better— or were even successful—providing lessons for us as we contemplate changing the name of PCOS. In 2002, Royal Mail in the United Kingdom renamed itself Consignia. This did not go well with the average British consumer who had no idea what “consignia” even meant. (It’s a derivative of the Italian word “consegna” meaning “act of delivering”). The name was quietly phased out over the next 2 years. And in 2009, Kraft Foods renamed the venerable British toast spread Vegemite as iSnack 2.0. But before you ask what that name even means, out of fairness we should note that, in a most democratic manner, Kraft chose the name by holding a contest that allowed consumers to suggest and choose the new name. Nonetheless, public outrage was severe and Kraft switched back to Vegemite within 5 days! These lessons remind us that names must mean something and that holding contests (or the equivalent in science, surveys) is not the most effective means of identifying a useful name. Name changes have even occurred for those most long lasting and venerable of institutions— universities. For example, our university was originally called the Medical Academy of Georgia in 1828; our health sciences campus went through various name changes over the years, first to the Medical Institute of Georgia, then to the Medical College of Georgia (MCG), then the Medical Department (and later the Medical School) of the University of Georgia, then back to MCG in 1950. In 2011, MCG changed its name to the Georgia Health Sciences University (GHSU). Our undergraduate/liberal arts campus began its modern life in 1925 as the Junior College of Augusta, then Augusta College, and in 1996 Augusta State University (ASU). And in 2013, GHSU and ASU consolidated to create a larger university, and—you guessed it— underwent another name change, this time to the current Georgia Regents University (GRU), a name intended to indicate
jcem.endojournals.org
1143
that the university had a statewide footprint and was not only dedicated to the health sciences. As a university president who oversaw two institutional name changes in less than 2 years, this investigator learned lessons that may be useful to keep in mind as we address the changes contemplated for PCOS. First, the rationale for changing the name of an institution (or something almost as equally revered, a medical disorder) should be made clear a priori. Secondly, the name chosen should serve its stated purpose; in the case of a university—its scope and focus, and in the case of a medical disorder— what the disorder is. So first, we should ask ourselves, why change a name? In the case of our university, we needed to denote that we were a new larger university with a statewide footprint. For a medical disorder we can propose at least four compelling reasons to change its name: • • • •
The name is misleading or confusing. The name has negative associations. The name results in low brand equity. The name is regional or localistic.
And these all apply to the name PCOS. Polycystic ovary syndrome implies that polycystic ovaries are the sine qua non of the disorder, which is simply not true. Although a majority of patients with PCOS will have polycystic-appearing ovaries, this morphological feature is also common in patients without the disorder (5). Furthermore, the name is misleading because it implies that the polycystic ovaries are the cause, when in fact they are simply associated with the disorder. The term “polycystic ovary syndrome” has negative connotations with patients, who are then made to worry excessively about the cysts (or, as they view it, “tumors”) on their ovaries. And the name has low brand equity; if anything, it has a significant negative impact on funding and support for this area of research. And although a pervasive and significant part of the syndrome relates to its metabolic dysfunction, few corporate or governmental funding agencies view the disorder as anything more than a reproductive dysfunction (eg, witness the few grants on PCOS funded through NIH institutes or centers other than the Eunice Kennedy Shriver National Institute of Child Health and Human Development). Finally, some investigators have tried to use the acronym PCOS rather than the longer (and as noted above, confusing and misleading) term polycystic ovary syndrome, much like Kentucky Fried Chicken has rebranded itself to KFC because it serves more than chicken and “fried” does not sit well with an increasingly health-conscious consumer. However, the acronym PCOS is based on the English translation, whereas in Latin America the
The Endocrine Society. Downloaded from press.endocrine.org by [${individualUser.displayName}] on 27 April 2014. at 06:21 For personal use only. No other uses without permission. . All rights reserved.
1144
Azziz
Commentary: Renaming PCOS
abbreviation SOP is preferred (for síndrome de ovario policístico). However, we should note that this geographic advantage will likely not be addressed by any name (or abbreviation) chosen. Further support for a name change for PCOS stems from a recent study of primary care providers and consumers in Australia (6). In a cross-sectional study of 57 women with PCOS and 105 primary care physicians, 48% of consumers agreed that the name polycystic ovary syndrome was confusing, and 51% agreed that the name should be changed. Among primary care physicians, 74% agreed that the name was confusing, and 81% agreed that it should be changed to reflect the broader clinical syndrome. And lest we think the issue of a proper name for the syndrome is of little relevance, 81% of women and 93% of primary care physicians felt the name was important for women with the condition; and 60 and 72%, respectively, felt the name was also important for physicians. Secondly, we noted that the name chosen should serve to readily, perhaps intuitively, let patients, healthcare providers, and the public at large know what the disorder is about. But for PCOS, this is a more complex issue, serving as the strongest deterrent against renaming the disorder because, unfortunately, its etiology remains unclear and is likely a conglomeration of numerous different molecular pathophysiologies with similar clinical endpoints. And there is no uniform clinical feature; ovulatory dysfunction affects 80 to 100%; polycystic-appearing ovarian morphology (PCOM), 70 to 90%; hyperandrogenism, 50 to 100%; and metabolic dysfunction, 50 to 70%, depending on the definition used and the types of diagnostic approaches used (5, 7). Even the eminent consensus panel appointed by the NIH demurred from suggesting a new name. Recently, in the pages of the JCEM, Dunaif and Fauser (8) suggested a “two-state solution” to the NIH Consensus panel’s recommendations. These investigators suggested that there be two names for the PCOS phenotypes: those with primarily reproductive consequences should continue to be called PCOS, and those with important metabolic consequences should have a new name. This proposal is based largely on the perception that these patients are generally cared for by two separate and distinct groups of physicians, ie, obstetrician-gynecologists and related subspecialists who deal with the reproductive consequences of the disorder; and internists, family physicians, and related subspecialists who deal with general health issues and/or the metabolic consequences of the disorder. They go on to note that it is “essential to recognize the perspectives of these diverse constituencies to ensure that both nomenclature and diagnostic criteria meet their specific needs.” These investigators further empha-
J Clin Endocrinol Metab, April 2014, 99(4):1142–1145
size the political nature of the compromise by stating, “The last thing that is needed is a cross-disciplinary debate on the syndrome’s name. Let’s not mirror the Middle East but rather establish our highly collaborative two states forthwith” (8). This seems a sensible compromise, but it ignores the fact that the reproductive and metabolic phenotypes are inextricably linked and cannot be so easily separated. In fact, it is quite clear that the reproductive and metabolic phenotypes, if anything, are tightly linked. For example, patients with PCOS defined by the NIH 1990 criterion (often defined as “classic” PCOS) demonstrate both oligoovulation and hyperandrogenism and have the highest risk for metabolic dysfunction (9, 10). And in a recent study, we observed that in PCOS the presence of clinically evident menstrual dysfunction can be used to predict the presence and possibly the degree of insulin resistance in women with PCOS (11). The proposal by Dunaif and Fauser (8) seems to affirm the dubious concept that it is reasonable and desirable for the same disorder to be called by different names, depending on what specialist sees the patient. It is this investigator’s belief that this proposal would further the unfortunate dichotomy that currently exists in the medical field between obstetrician-gynecologists and related subspecialists and other medical specialists. This dichotomy also ignores the fact that obstetrician-gynecologists are often the primary care providers for their patients. It also disregards the fact that appropriate medical care by nonobstetrician-gynecologists must consider the reproductive consequences of the disorder, including subfertility and an increased risk for dysfunctional uterine bleeding and endometrial atypia and cancer. So what can this investigator suggest? One option is to leverage what is already happening in the world of androgen excess research, where PCOS is being subdivided and considered according to its phenotypes (2, 5). In that case, using the broadest definition of the disorder, the Rotterdam 2003 criterion (12), the disorder could be subdivided naturally into three broad phenotypes: the classic form (oligo-anovulation ⫹ hyperandrogenism ⫾ PCOM), the ovulatory form (hyperandrogenism ⫹ PCOM), and the normoandrogenic form (oligoanovulation ⫹ PCOM) (9, 10). As previously noted, the classic form is most commonly associated with clinically significant metabolic dysfunction. So perhaps we should rename the classic form of PCOS, by far the most common type of the disorder seen clinically (13), as the “functional metabolic-hyperandrogenic syndrome,” or better still, the “metabolic hyperandrogenic syndrome” (MHS or MH syndrome). The ovulatory forms could be called the “polycystic ovary-hyperandro-
The Endocrine Society. Downloaded from press.endocrine.org by [${individualUser.displayName}] on 27 April 2014. at 06:21 For personal use only. No other uses without permission. . All rights reserved.
doi: 10.1210/jc.2013-3996
genic syndrome” (POHS or POH syndrome), and the normoandrogenic forms could be termed the “polycystic ovary-anovulatory syndrome” (POAS or POA syndrome). Although this scheme does not differ markedly from the Dunaif and Fauser (8) proposal, the proposed nomenclature is based on clinical phenotype, not on discipline of the healthcare provider. Finally, a cautionary word on name changing: it will be successful only if the campaign is well conceived (in purpose, process, engagement, and communication plan), has widespread authority behind it, and is accompanied by the resources needed to educate the affected public, patient, and medical communities. Name changes at GRU have been successful because the changes: 1) had enormous authority behind them, originating from the highest levels of university and state administration; 2) had widespread (although not universal) engagement; and 3) were provided the necessary resources for implementation. Similar conditions will be needed to drive a name change in the field of PCOS research and care. Despite these challenges, as noted by the NIH consensus panel, “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.” Let’s embrace the call to action and identify leadership, stakeholders, and sponsors to drive the process, develop clear global engagement and education plans, and identify the resources necessary to effect these. And we should recognize that as new data are obtained, our hope should be that the eventual classification of the disorder we today know as a syndrome (or more properly a collection of syndromes) would change into specific disease entities.
Acknowledgments Address all correspondence and requests for reprints to: Ricardo Azziz, Office of the President, Georgia Regents University, 1120 15th Street, AA 311, Augusta, GA 30912.
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This work was supported by National Institutes of Health Grant R01-HD29364. It was based on a lecture given at the Fifth Meeting of the Peacock Society, Provence, France, September 19 –21, 2013. Disclosure Summary: The author has nothing to disclose.
References 1. Stein IF, Leventhal ML. Amenorrhea associated with bilateral polycystic ovaries. Am J Obstet Gynecol. 1935;29:181–191. 2. NIH Office of Disease Prevention. Final report of Evidence-based Methodology Workshop on Polycystic Ovary Syndrome (PCOS). http://prevention.nih.gov/p2p/pcos/resources.aspx. Accessed January 29, 2014. 3. Lobo RA. A disorder without identity: “HCA,” “PCO,” “PCOD,” “PCOS,” “SLS”. What are we to call it?! Fertil Steril. 1995;63: 1158 –1160. 4. Behera M, Price T, Walmer D. Estrogenic ovulatory dysfunction or functional female hyperandrogenism: an argument to discard the term polycystic ovary syndrome. Fertil Steril. 2006;86:1292–1295. 5. Azziz R, Carmina E, Dewailly D, et al. The Androgen Excess and PCOS Society criteria for the polycystic ovary syndrome: the complete task force report. Fertil Steril. 2009;91:456 – 488. 6. Teede H, Gibson-Helm M, Norman RJ, Boyle J. Polycystic ovary syndrome: perceptions and attitudes of women and primary health care physicians on features of PCOS and renaming the syndrome. J Clin Endocrinol Metab. 2014;99:E107–E111. 7. Azziz R. Diagnosing the diagnosis: why we must standardize the defining features of polycystic ovary syndrome. Ann Clin Biochem. 2008;45:3–5. 8. Dunaif A, Fauser BC. Renaming PCOS–a two-state solution. J Clin Endocrinol Metab. 2013;98:4325– 4328. 9. Panidis D, Tziomalos K, Misichronis G, et al. Insulin resistance and endocrine characteristics of the different phenotypes of polycystic ovary syndrome: a prospective study. Hum Reprod. 2012;27:541– 549. 10. Moghetti P, Tosi F, Bonin C, et al. Divergences in insulin resistance between the different phenotypes of the polycystic ovary syndrome. J Clin Endocrinol Metab. 2013;98:E628 –E637. 11. Brower M, Brennan K, Pall M, Azziz R. The severity of menstrual dysfunction as a predictor of insulin resistance in PCOS. J Clin Endocrinol Metab. 2013;98:E1967–E1971. 12. Rotterdam ESHRE/ASRM-Sponsored PCOS Consensus Workshop Group. Revised 2003 consensus on diagnostic criteria and long-term health risks related to polycystic ovary syndrome. Fertil Steril. 2004; 81:19 –25. 13. Ezeh U, Yildiz BO, Azziz R. Referral bias in defining the phenotype and prevalence of obesity in polycystic ovary syndrome. J Clin Endocrinol Metab. 2013;98:E1088 –E1096.
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F E A T U R E
C o m m e n t a r y
Polycystic Ovary Syndrome: What’s in a Name? Ricardo Azziz Department of Obstetrics and Gynecology and Department of Medicine, Medical College of Georgia, Georgia Regents University, Augusta, Georgia 30912
What’s in a Name? ssigning 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
A
ISSN Print 0021-972X ISSN Online 1945-7197 Printed in U.S.A. Copyright © 2014 by the Endocrine Society Received November 4, 2013. Accepted January 16, 2014. First Published Online February 3, 2014
1142
jcem.endojournals.org
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 Abbreviations: PCOS, polycystic ovary syndrome; PCOM, polycystic-appearing ovarian morphology.
J Clin Endocrinol Metab, April 2014, 99(4):1142–1145
doi: 10.1210/jc.2013-3996
The Endocrine Society. Downloaded from press.endocrine.org by [${individualUser.displayName}] on 27 April 2014. at 06:21 For personal use only. No other uses without permission. . All rights reserved.
doi: 10.1210/jc.2013-3996
farmers wanted to sell it. Although the fruit originated in the Yangtzee Valley in northern China, the strategy has been pretty successful because New Zealand is now one of the largest exporters of kiwifruit to the United States. Also in the United States, where we can be squeamish about what we eat, dolphinfish were renamed mahi-mahi because Americans don’t want to eat dolphins—although dolphinfish are not at all mammals. And the Patagonian toothfish was renamed Chilean sea bass, opening a whole new market in the United States for this fish, a naming strategy so successful that the species has since been overfished. Corporations have changed their names as well; eg, Blue Ribbon Sports to Nike, Standard Oil Company to Exxon Mobile, and Jerry’s Guide to the World Wide Web to Yahoo. In the rapidly changed world of business, however, not all changes were for the better— or were even successful—providing lessons for us as we contemplate changing the name of PCOS. In 2002, Royal Mail in the United Kingdom renamed itself Consignia. This did not go well with the average British consumer who had no idea what “consignia” even meant. (It’s a derivative of the Italian word “consegna” meaning “act of delivering”). The name was quietly phased out over the next 2 years. And in 2009, Kraft Foods renamed the venerable British toast spread Vegemite as iSnack 2.0. But before you ask what that name even means, out of fairness we should note that, in a most democratic manner, Kraft chose the name by holding a contest that allowed consumers to suggest and choose the new name. Nonetheless, public outrage was severe and Kraft switched back to Vegemite within 5 days! These lessons remind us that names must mean something and that holding contests (or the equivalent in science, surveys) is not the most effective means of identifying a useful name. Name changes have even occurred for those most long lasting and venerable of institutions— universities. For example, our university was originally called the Medical Academy of Georgia in 1828; our health sciences campus went through various name changes over the years, first to the Medical Institute of Georgia, then to the Medical College of Georgia (MCG), then the Medical Department (and later the Medical School) of the University of Georgia, then back to MCG in 1950. In 2011, MCG changed its name to the Georgia Health Sciences University (GHSU). Our undergraduate/liberal arts campus began its modern life in 1925 as the Junior College of Augusta, then Augusta College, and in 1996 Augusta State University (ASU). And in 2013, GHSU and ASU consolidated to create a larger university, and—you guessed it— underwent another name change, this time to the current Georgia Regents University (GRU), a name intended to indicate
jcem.endojournals.org
1143
that the university had a statewide footprint and was not only dedicated to the health sciences. As a university president who oversaw two institutional name changes in less than 2 years, this investigator learned lessons that may be useful to keep in mind as we address the changes contemplated for PCOS. First, the rationale for changing the name of an institution (or something almost as equally revered, a medical disorder) should be made clear a priori. Secondly, the name chosen should serve its stated purpose; in the case of a university—its scope and focus, and in the case of a medical disorder— what the disorder is. So first, we should ask ourselves, why change a name? In the case of our university, we needed to denote that we were a new larger university with a statewide footprint. For a medical disorder we can propose at least four compelling reasons to change its name: • • • •
The name is misleading or confusing. The name has negative associations. The name results in low brand equity. The name is regional or localistic.
And these all apply to the name PCOS. Polycystic ovary syndrome implies that polycystic ovaries are the sine qua non of the disorder, which is simply not true. Although a majority of patients with PCOS will have polycystic-appearing ovaries, this morphological feature is also common in patients without the disorder (5). Furthermore, the name is misleading because it implies that the polycystic ovaries are the cause, when in fact they are simply associated with the disorder. The term “polycystic ovary syndrome” has negative connotations with patients, who are then made to worry excessively about the cysts (or, as they view it, “tumors”) on their ovaries. And the name has low brand equity; if anything, it has a significant negative impact on funding and support for this area of research. And although a pervasive and significant part of the syndrome relates to its metabolic dysfunction, few corporate or governmental funding agencies view the disorder as anything more than a reproductive dysfunction (eg, witness the few grants on PCOS funded through NIH institutes or centers other than the Eunice Kennedy Shriver National Institute of Child Health and Human Development). Finally, some investigators have tried to use the acronym PCOS rather than the longer (and as noted above, confusing and misleading) term polycystic ovary syndrome, much like Kentucky Fried Chicken has rebranded itself to KFC because it serves more than chicken and “fried” does not sit well with an increasingly health-conscious consumer. However, the acronym PCOS is based on the English translation, whereas in Latin America the
The Endocrine Society. Downloaded from press.endocrine.org by [${individualUser.displayName}] on 27 April 2014. at 06:21 For personal use only. No other uses without permission. . All rights reserved.
1144
Azziz
Commentary: Renaming PCOS
abbreviation SOP is preferred (for síndrome de ovario policístico). However, we should note that this geographic advantage will likely not be addressed by any name (or abbreviation) chosen. Further support for a name change for PCOS stems from a recent study of primary care providers and consumers in Australia (6). In a cross-sectional study of 57 women with PCOS and 105 primary care physicians, 48% of consumers agreed that the name polycystic ovary syndrome was confusing, and 51% agreed that the name should be changed. Among primary care physicians, 74% agreed that the name was confusing, and 81% agreed that it should be changed to reflect the broader clinical syndrome. And lest we think the issue of a proper name for the syndrome is of little relevance, 81% of women and 93% of primary care physicians felt the name was important for women with the condition; and 60 and 72%, respectively, felt the name was also important for physicians. Secondly, we noted that the name chosen should serve to readily, perhaps intuitively, let patients, healthcare providers, and the public at large know what the disorder is about. But for PCOS, this is a more complex issue, serving as the strongest deterrent against renaming the disorder because, unfortunately, its etiology remains unclear and is likely a conglomeration of numerous different molecular pathophysiologies with similar clinical endpoints. And there is no uniform clinical feature; ovulatory dysfunction affects 80 to 100%; polycystic-appearing ovarian morphology (PCOM), 70 to 90%; hyperandrogenism, 50 to 100%; and metabolic dysfunction, 50 to 70%, depending on the definition used and the types of diagnostic approaches used (5, 7). Even the eminent consensus panel appointed by the NIH demurred from suggesting a new name. Recently, in the pages of the JCEM, Dunaif and Fauser (8) suggested a “two-state solution” to the NIH Consensus panel’s recommendations. These investigators suggested that there be two names for the PCOS phenotypes: those with primarily reproductive consequences should continue to be called PCOS, and those with important metabolic consequences should have a new name. This proposal is based largely on the perception that these patients are generally cared for by two separate and distinct groups of physicians, ie, obstetrician-gynecologists and related subspecialists who deal with the reproductive consequences of the disorder; and internists, family physicians, and related subspecialists who deal with general health issues and/or the metabolic consequences of the disorder. They go on to note that it is “essential to recognize the perspectives of these diverse constituencies to ensure that both nomenclature and diagnostic criteria meet their specific needs.” These investigators further empha-
J Clin Endocrinol Metab, April 2014, 99(4):1142–1145
size the political nature of the compromise by stating, “The last thing that is needed is a cross-disciplinary debate on the syndrome’s name. Let’s not mirror the Middle East but rather establish our highly collaborative two states forthwith” (8). This seems a sensible compromise, but it ignores the fact that the reproductive and metabolic phenotypes are inextricably linked and cannot be so easily separated. In fact, it is quite clear that the reproductive and metabolic phenotypes, if anything, are tightly linked. For example, patients with PCOS defined by the NIH 1990 criterion (often defined as “classic” PCOS) demonstrate both oligoovulation and hyperandrogenism and have the highest risk for metabolic dysfunction (9, 10). And in a recent study, we observed that in PCOS the presence of clinically evident menstrual dysfunction can be used to predict the presence and possibly the degree of insulin resistance in women with PCOS (11). The proposal by Dunaif and Fauser (8) seems to affirm the dubious concept that it is reasonable and desirable for the same disorder to be called by different names, depending on what specialist sees the patient. It is this investigator’s belief that this proposal would further the unfortunate dichotomy that currently exists in the medical field between obstetrician-gynecologists and related subspecialists and other medical specialists. This dichotomy also ignores the fact that obstetrician-gynecologists are often the primary care providers for their patients. It also disregards the fact that appropriate medical care by nonobstetrician-gynecologists must consider the reproductive consequences of the disorder, including subfertility and an increased risk for dysfunctional uterine bleeding and endometrial atypia and cancer. So what can this investigator suggest? One option is to leverage what is already happening in the world of androgen excess research, where PCOS is being subdivided and considered according to its phenotypes (2, 5). In that case, using the broadest definition of the disorder, the Rotterdam 2003 criterion (12), the disorder could be subdivided naturally into three broad phenotypes: the classic form (oligo-anovulation ⫹ hyperandrogenism ⫾ PCOM), the ovulatory form (hyperandrogenism ⫹ PCOM), and the normoandrogenic form (oligoanovulation ⫹ PCOM) (9, 10). As previously noted, the classic form is most commonly associated with clinically significant metabolic dysfunction. So perhaps we should rename the classic form of PCOS, by far the most common type of the disorder seen clinically (13), as the “functional metabolic-hyperandrogenic syndrome,” or better still, the “metabolic hyperandrogenic syndrome” (MHS or MH syndrome). The ovulatory forms could be called the “polycystic ovary-hyperandro-
The Endocrine Society. Downloaded from press.endocrine.org by [${individualUser.displayName}] on 27 April 2014. at 06:21 For personal use only. No other uses without permission. . All rights reserved.
doi: 10.1210/jc.2013-3996
genic syndrome” (POHS or POH syndrome), and the normoandrogenic forms could be termed the “polycystic ovary-anovulatory syndrome” (POAS or POA syndrome). Although this scheme does not differ markedly from the Dunaif and Fauser (8) proposal, the proposed nomenclature is based on clinical phenotype, not on discipline of the healthcare provider. Finally, a cautionary word on name changing: it will be successful only if the campaign is well conceived (in purpose, process, engagement, and communication plan), has widespread authority behind it, and is accompanied by the resources needed to educate the affected public, patient, and medical communities. Name changes at GRU have been successful because the changes: 1) had enormous authority behind them, originating from the highest levels of university and state administration; 2) had widespread (although not universal) engagement; and 3) were provided the necessary resources for implementation. Similar conditions will be needed to drive a name change in the field of PCOS research and care. Despite these challenges, as noted by the NIH consensus panel, “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.” Let’s embrace the call to action and identify leadership, stakeholders, and sponsors to drive the process, develop clear global engagement and education plans, and identify the resources necessary to effect these. And we should recognize that as new data are obtained, our hope should be that the eventual classification of the disorder we today know as a syndrome (or more properly a collection of syndromes) would change into specific disease entities.
Acknowledgments Address all correspondence and requests for reprints to: Ricardo Azziz, Office of the President, Georgia Regents University, 1120 15th Street, AA 311, Augusta, GA 30912.
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This work was supported by National Institutes of Health Grant R01-HD29364. It was based on a lecture given at the Fifth Meeting of the Peacock Society, Provence, France, September 19 –21, 2013. Disclosure Summary: The author has nothing to disclose.
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