Australian GPs and specialists alike have concerns about the complexities associated with diagnosing PCOS and mixed feelings about the potential benefits and harms of women receiving an uncertain diagnosis.
Semi-structured interviews with 36 GPs, gynaecologists and endocrinologists conducted between September 2017 and July 2018 showed the level of uncertainty, despite wide use of the Rotterdam criteria for diagnosing PCOS.
‘Sometimes it’s very hard to say when the normal finishes and the abnormal begins.’ (Endo, practicing 25 years)
‘Often I do get women coming saying oh yes, I’ve got polycystic ovarian syndrome, I’ve been diagnosed by a GP. And the only syndrome they have is obesity.’ (Endo, practicing 15 years)
‘We just have to be very cautious in labelling them with conditions that are going to stay with them for a long time if there’s any level of uncertainty.’ (Endo, practicing 30 years)
Some clinicians thought the diagnosis could cause more harm than benefit especially in women with mild symptoms, that it carried some stigma and may cause more grief than required.
Other clinicians thought a diagnosis might be helpful if it encouraged women to adopt healthier lifestyles.
However lead author and psychologist Ms TessaCopp, from the University of Sydney’s School of Public Health, told the limbic the evidence suggested otherwise.
An analysis of data from the Australian Longitudinal Study on Women’s Health had shown that behaviours don’t necessarily change before and after a diagnosis of PCOS.
“Women don’t initiate healthy lifestyle changes to reduce their risks. It’s disappointing but not that surprising because a large number of trials have shown that information doesn’t change behavior. We need to do more as a society to improve our environment to facilitate behaviour change. It’s a lot to put on individuals.”
Ms Copp said quite a few endocrinologists who participated in the study raised concerns about overdiagnosis and misdiagnosis due to conditions such as disordered eating, obesity and hypothalamic amenorrhea which can produce symptoms which mimic signs of PCOS.
They were also concerned about PCOS phenotypes for women without androgen excess – women who did not have the same increased metabolic risk as women with hyperandrogenic phenotypes.
However implementation of the 2018 evidence-based guidelines should have helped allay concerns.
Ms Copp said an increased threshold of follicles required to have PCOS and recommendations against ultrasounds in adolescents were positive steps forward.
“The challenge with PCOS is, because it is a syndrome which varies in severity, there is confusion and debate about where to draw the line between normal and abnormal and symptoms can change over time, with age, weight and ethnicity. There can be variations.”
She noted there was a lack of longitudinal evidence on disease progression and treatment outcomes.