PCOS Diagnosis: One Size Does Not Fit All

Veronica Hackethal, MD

August 25, 2017

A more thoughtful, deliberate approach to diagnosing polycystic ovary syndrome (PCOS) is needed, experts argue in a research analysis published online August 16 in the BMJ. They say the current one-size-fits-all approach risks labeling and harming some women.

"It is problematic to diagnose women who fit the broad diagnostic criteria at one stage in their life with a one-size-fits-all label when the consequences of the disease are not the same for everyone," lead author Tessa Copp, a PhD student at the University of Sydney, Australia, commented in an email to Medscape Medical News.

"Women will go home and google 'PCOS' and think they are going to get all the associated metabolic and cardiovascular consequences, when evidence has found that not all types of PCOS are at risk," she added.

PCOS is the most commonly diagnosed endocrine disorder in women of reproductive age. It has been linked to increased risk for other health conditions, including decreased fertility, type 2 diabetes, dyslipidemia, hypertension, endometrial cancer, and possibly cardiovascular disease.  

However, receiving a diagnosis of PCOS can be stigmatizing. PCOS has been associated with anxiety, depression, negative body image, low self-esteem, disordered eating, and decreased sexual satisfaction.

Some of the controversy about diagnosing PCOS stems from a 2003 meeting in Rotterdam, the Netherlands, which expanded the diagnostic criteria. Since then, a National Institutes of Health committee has opted to retain the broader definition, while acknowledging the importance of recognizing that PCOS has a wide clinical expression.

The current broadened criteria use a combination of menstrual irregularity, clinical and/or biochemical signs of androgen excess (such as hirsutism and acne), and polycystic ovaries. Widening the diagnostic criteria may have contributed to a rise in the prevalence of PCOS.

"We are currently labeling around 15% of young women with this condition, and we are unsure how to decide who would benefit [from diagnosis] vs who will not," Ms Copp commented.

One problem is that PCOS symptoms usually appear during adolescence and can overlap with signs of normal adolescence, complicating the diagnosis. Also, symptoms change over a life-span, vary in severity, and may be transitory for some women. Current diagnostic criteria do not address these issues.

"Another criticism is that there is insufficient high-quality evidence to back up these criteria and the long-term benefits of diagnosis and treatment of PCOS. In particular, the distinction between the different phenotypes has been underresearched," Ms Copp said.

Early diagnosis in women with severe symptoms of PCOS or high androgen levels, who may be at higher risk for long-term health problems, provides the opportunity to intervene. Lifestyle changes, screening for comorbidities, and medication may decrease the risk of long-term health problems. Early diagnosis may also provide access to fertility treatment when desired.

However, for some women a lifelong label of PCOS may not change treatment. For example, a woman with menstrual irregularities would be treated with birth control pills whether or not she is diagnosed with PCOS.

Therefore, rushing to diagnose some women — particularly those without clinical signs of androgen excess — may expose them to increased intervention without benefit and with possible harm.

"We are concerned that for women with mild symptoms or at very low risk of future illness, a diagnosis can provide more harm than benefit, inducing unnecessary fear and anxiety about future fertility and long-term health, as well as having to undergo regular screening for comorbidities," Ms Copp explained.

She also stressed the importance of follow-up to determine whether symptoms are transitory and individualized care that carefully weighs the benefits and risks for each woman.

"More transparent conversations with women are needed about the limitations of the current evidence. At the very minimum, physicians should identify the phenotype when diagnosing PCOS, which should be reviewed in detail with the patient, and potential long-term implications of their particular phenotype should be reviewed," she emphasized.

Ricardo Azziz, MD, MPH, of the State University of New York (SUNY) at Stony Brook, who was not involved in the analysis, said that he agrees with the general message, but with some caveats.

"Early diagnosis is important, which means it needs to be as quick as possible. But that doesn't mean it needs to be inaccurate. I think that the authors are simply saying we should take a more deliberate, thoughtful approach to the diagnosis of PCOS, which I agree with," he said.

He also agreed about the need to consider a narrower definition of PCOS in many cases.

"We have advocated for a long time that there is certainly more than one form of PCOS. Including all women with polycystic-looking ovaries and irregular ovulation does expand the definition to a much larger group of individuals who don't seem to have the same types of risks as the rest of the patients," he said.

Not all PCOS is the same, he stressed. Physicians need to recognize the different presentations of the condition and how this affects risk of metabolic and vascular complications.

"The actual criteria used for diagnosis are less important than the actual presentation of PCOS. One should be careful about labeling patients with PCOS with insufficient evidence because labeling has lifelong consequence," he said.

The authors and Dr Azziz have reported no relevant financial relationships.

BMJ. 2017;358:j3694. Abstract

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