WOMEN’S health experts have raised concerns about new Australian research reporting that diagnosing young women with polycystic ovary syndrome (PCOS) may have detrimental psychological effects and may prompt women to undergo unnecessary medical testing.

The researchers reported in Human Reproduction that diagnosing women with PCOS may be associated with lower self-esteem and may increase a woman’s intention to have an ultrasound.

For the study, 181 healthy, female university students were randomised to receive one of four hypothetical scenarios during a medical consult in a 2 by 2 design (PCOS disease label provided versus no disease label, and information provided about unreliability of ultrasounds in clarifying diagnosis versus no information).

In the hypothetical scenario presented, participants were asked to imagine that for the past 6 months they had had unusually irregular periods, a few more pimples than usual and an increase body hair in certain areas prompting them to visit their GP to see if this was of concern.

The researchers said that participants given the PCOS label were significantly more likely to report an intention to have an ultrasound, to perceive the condition as being severe and to report lower self-esteem.

They concluded that greater awareness of the risk of overdiagnosis of PCOS was warranted “to reduce the use of unhelpful labels, unnecessary tests and treatments and prevent the detrimental effects of labelling on psychological wellbeing”.

But Professor Helena Teede, Professor of Women’s Heath at Monash University, lead on the international PCOS guidelines and NHMRC PCOS Centre for Excellence, raised concerns about the study’s methodology and conclusion.

She said that while it was valid to question if a PCOS label was distressing, it was inappropriate to use a hypothetical scenario in healthy young women unaffected by PCOS, especially one that is clinically flawed, to answer this question. For example, Professor Teede noted that according to current guidelines, an ultrasound would not be recommended in the case scenario used in the research, because the patient already had two of the three features of PCOS, which was adequate for a diagnosis. She also challenged the follow-up medical advice on overdiagnosis in the research study, as potentially inaccurate.

“It’s very important not to send a general message that PCOS is being overdiagnosed, based on a hypothetical scenario in well women, when the evidence shows that it’s underdiagnosed, diagnosis is delayed, and the diagnosis experience is very frustrating for women,” Professor Teede told MJA InSight.

“The majority of Australian women diagnosed with PCOS have not had mild symptoms, but rather more severe and often distressing symptoms of irregular menstrual cycles, heralding reduced fertility, acne and increased body hair, which can significantly affect body image, self-esteem and quality of life.”

She said that in her clinical work, engagement with consumer groups and her recent international survey of 1800 1385 women, it was clear that women with PCOS were distressed by their condition and disappointed with delays in diagnosis. Over a third of women reported more than 2 years and three health professional reviews before a diagnosis.

In another study of 11 000 Australian women over 9 years, those with PCOS were distressed before they were diagnosed, with no impact of diagnosis, reflecting the inherent distressing nature of the condition.

Professor Teede agreed that there were instances in which the diagnosis could be unhelpful, but that the evidence suggests this could be due to poor diagnosis experience, with clear opportunities for improvement including providing quality information and education on different treatments for affected women.

“There is still significant misinformation in the community with some young women with PCOS being told they will not be able to have a family – that’s potentially destructive and inaccurate,” she said. “Our national data show that the majority of women with PCOS will have a family, and often a similar sized family to women without PCOS, but they may need medical assistance.”

Overall, she said, the evidence showed that PCOS diagnosis was delayed and the experience could be improved, not that PCOS was overdiagnosed.

Professor Teede also noted that according to current guidelines, an ultrasound would not be recommended in the case scenario used in the research, because the patient had two of the three features of PCOS, which was adequate for a diagnosis.

Dr Rosie Worsley, an endocrinologist with Jean Hailes for Women’s Health, said that the Human Reproduction article made some valuable generic points about the importance of communication in medical consultations, but questioned the specific applicability to PCOS. She also shared Professor Teede’s concern about the use of a hypothetical scenario to explore the problem.

“There is some use in [reminding clinicians to] think about the words that you choose and to be mindful in choosing tests because that will have an immediate impact on the person, but I think that’s more of a generic point rather than a point you could use for any one diagnosis.”

She said that a PCOS diagnosis often brought relief to women who had been experiencing symptoms for several years without diagnosis. Earlier diagnosis, she added, also gave women the opportunity to maintain their general health and keep an eye on weight gain.

Responding to the concerns raised, lead author Dr Tessa Copp, from the University of Sydney, said that the study was to assess the impact of the PCOS label, compared with no label, on intention to have an ultrasound and psychosocial outcomes.

“The only way to do this, without the participants’ responses being biased by prior experiences and expectations of a PCOS diagnosis, is to use identical hypothetical scenarios,” she said, noting that the scenario used was informed by the real-life experience of a colleague coupled with clinical experience in the research team.

Dr Copp said that she agreed that distressing symptoms, delays in diagnosis and underdiagnosis were a source of frustration for some women; however, this was not the focus of her group’s study.

“This study focuses on women with milder symptoms and milder phenotypes of PCOS who may experience unnecessary distress as a result of their diagnosis, and the scenario was designed to depict a mild but common presentation of PCOS in young women,” Dr Copp told MJA InSight.

“We agree that the PCOS diagnosis may have benefits, which we acknowledge in the paper, for example … explanation of symptoms and treatment of infertility for women actively seeking pregnancy.”

However, she said, the paper highlighted the importance of considering potential harms, such as raising concerns about reduced fertility and the need to plan for having children, particularly for women in their late teens and early 20s.

“What is unclear is whether the potential benefits justify labelling the disease for every woman,” Dr Copp said.

 

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6 thoughts on “Research sparks PCOS label debate

  1. Jules Black says:

    Surprise surprise!
    I have always felt the “new wave” of colleagues overdiagnose this condition.
    Originally before the acronym PCOS was even thought of, the following mnemonic described the polycystic ovary syndrome. AAASHO. ACNE, ADIPOSITY, AMENORRHOEA, HIRSUTES, STERILITY & OVARIAN PATHOLOGY. You see, there isn’t a woman on this planet with at least one ovary in place, of no matter what age or where she is in her cycle (if present), in whom there is not at least one cyst upon scanning. Whilst still in practice, I was sent so many women in whom the diagnosis was made using very flimsy criteria and in whom therapeutic objectives (such as pregnancy) were achieved without resorting to sometimes excessive measures.

  2. Casper David Wrede says:

    This is not surprising. I regularly see women who say they have PCOS (which should be PFOS in any case) on the basis of one ultra-sound. The RANZCOG patient information and some web based material is useful to demystify this syndrome and the facts that not all with ovarian appearances on U/S have the syndrome and by far the majority have mild expression that is easily managed. However ad s cancer prevention specialist I continue to be alarmed that no overt warning about the increased risks of endometrial hyperplasia and cancer are publicised, with particular focus on those with raised BMI and oligo- or amenorrhea. This needs urgent correction and proactive advice to practitioners and women with a definite PCOS diagnosis. We are seeing more women now with these conditions even in their early thirties and many nullips before they have seen a reproductive specialist.

  3. Cathi Walker says:

    I have PCOS. I was diagnosed at age 28 after unsuccessful attempts to get pregnant. Diagnosis was highly useful – instead of constantly obsessing about getting pregnant, I then got hormonal treatment with was effective in allowing me to conceive. After I finished breast-feeding, I could then get a pill appropriate to stop the acne that I’d had since my early teens. I wish I’d known earlier! The teenage years and my 20s would have been much better without acne. However, knowing earlier could have stressed me also – by the time I was diagnosed, the pregnancy hormone treatment was much less daunting than even a few years beforehand (but I’d been on the pill for years, which masked the lack of periods and the facial hair issues; I wasn’t overweight).

  4. Katie says:

    I can’t believe we are not going to diagnose people incase they are upset! The long term health issues of mismanaged PCOS is detrimental to all. This topic should be discussed more in line with not only in pregnancy but long term diabetes, heart, inflammation issues in the body. The flow on effects of not having this chronic condition properly managed is not only heart breaking to women but costly to all. More talk on facts and less fluffiness around. Facts cannot be seen as anything other than facts.

  5. Anonymous says:

    Why is intention to have an ultrasound a bad outcome? The intention to have an ultrasound has no bearing on a person’s well being, as far as I’m aware.

  6. Sue Ieraci says:

    It is the correct approach to be diagnostically precise as this affects treatment and outcome. PCOS has become a popular label among ‘alternative’ providers, along with ‘adrenal fatigue’ and other thyroid pseudo-diagnoses. A diagnostic label should only be applied where it is pathophysiologically correct. Sometimes diagnoses are given – inappropriately – as a way of validating the person’s suffering and sell a ‘remedy’. Suffering should be validated by empathetic communication and explanation.

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