The complexity of PCOS and its treatment has sparked debate over who should be diagnosed
While some Australian experts argue that changing definitions have caused more women to be unnecessarily given the PCOS label, others caution against delaying diagnosis.
“There is a group of women for whom the diagnosis may be very appropriate and beneficial,” cognitive psychologist Dr Jesse Jansen said in a perspective published in the BMJ last week.
“But I think we shouldn’t underestimate the potential impact of being given a diagnosis on someone’s psychological wellbeing.”
Dr Jansen, a senior research fellow at the University of Sydney, and her colleagues, said the gradually broadening diagnostic criteria has captured women who might not benefit as much from a diagnosis, in particular, younger women and those with milder symptoms.
Polycystic ovary syndrome was first described 80 years ago, but it was in 1990, when the National Institutes of Health established diagnostic criteria, that the definition became formalised.
However, the 2003 addition of sonographic evidence of polycystic ovaries to the diagnostic criteria contributed to a fourfold increase in prevalence, from around 5% to as much as 21%, Dr Jansen and her colleagues said.
By 2006, clinicians were required to have clinical or biochemical evidence of hyperandrogenism for a diagnosis, due to the lesser long-term severity of non-hyperandrogenic phenotypes, as well as either oligo-ovulation or anovulation, or ultrasound evidence of polycystic ovaries.
“Many symptoms of PCOS, such as acne and oligomenorrhea, overlap with features common to pubertal development, but diagnostic criteria for PCOS don’t take adolescence into account,” co- author Tessa Copp said in a statement.
As a result, caution was needed around diagnosing PCOS during adolescence because a proportion of these women would only have mild symptoms and might resolve over time, they said.
Dr Jansen said that women were all lumped together under the one label, “so women who receive this label might think that they’re going to become hairy, spotty, infertile and
get diabetes”.
“You can imagine that can really influence their psychosocial wellbeing,” she said. “But also the decisions they make about their future, in particular, if they think their fertility might be reduced.”
Because the diagnosis is a lifelong one, it may be more beneficial to treat people’s symptoms where possible, and delay giving them a label, they argue.
They also pointed to the gaps in the evidence base, which has largely focused on women with more severe symptoms, limiting what can be said about long-term treatment and harms among women with more mild symptoms.
“What we recommend is a slower, stepped-care, or delayed approach, to diagnosis,” Dr Jansen said. “That way you can optimise the benefits for women who need the treatment and diagnosis, but the same time you can reduce the harm of disease labelling for the women who might not need the diagnosis.”
Leading Australian PCOS expert Professor Helena Teede said it was widely acknowledged diagnosis in adolescence was challenging and that a delay in diagnosis was not unreasonable.
“So that perspective is in line with current international guidelines,” she said.
However, Professor Teede said that the paper overlooked the well-documented and significant frustrations women already had with delayed diagnosis and concerns they had about inadequate care.
Suggestions to remove the PCOS label from the treatment process might add further difficulty to educating and informing women adequately about their condition, she said.
The resolution of some symptoms after adolescence was also misleading, because reproductive and then metabolic problems began to emerge later on, she said.
“It changes throughout the lifespan. But just because it’s complex, it doesn’t mean we don’t label it.”
BMJ 2017; online 17 August
