PCOS guidelines shine light on ‘neglected’ condition

People with polycystic ovary syndrome (PCOS) have renewed hope, following the release of a landmark set of guidelines that aim to improve the lives of those diagnosed with the ‘neglected’ condition.
 
The guidelines call for a fundamental shift in the way healthcare system thinks about PCOS, labelling it a long-term condition with wide-ranging symptoms reaching far beyond reproductive health.
 
Monash University’s 2023 International Polycystic Ovary Syndrome (PCOS) Guideline includes 254 recommendations and practice points, all promoting consistent and evidence-based care.
 
The authors say the syndrome has historically been under-diagnosed and under-researched, despite impacting up to 13% of women globally.
 
The driving force behind the guidelines, Monash University Professor Helena Teede described the research as a ‘coming of age’ for women’s health, and a call for it to be taken seriously.  
 
‘What women faced was two to three doctors and their symptoms and features being dismissed, they were just being put on the pill without a diagnosis, and basically, the health professionals didn’t know enough about it,’ Professor Teede told newsGP.
 
‘It’s about understanding it is a psychological, reproductive, and metabolic condition with many diverse features that are really linked, and women really do feel dismissed and not adequately cared for.
 
‘These conditions are often dismissed because they’re secret women’s business … they’re just not given the priority they deserve based on the impact that they have on quality of life.’
 
Significantly, the guidelines recommend revised diagnostic criteria for PCOS, involving hormone tests instead of ultrasound.
 
They also highlight the increased risk of premature heart disease and diabetes for PCOS sufferers, and the high prevalence of poor mental health, all of which need recognition, screening, and prevention.
 
‘Once diagnosed, assessment and management should address reproductive, metabolic, cardiovascular, dermatologic, sleep and psychological features,’ the guidelines recommended.
 
‘A lifelong reproductive health plan is recommended, including a focus on preconception risk factors, healthy lifestyle and prevention of weight gain and optimisation of fertility.’
 
Thousands of healthcare professionals and women contributed to the guidelines, which were developed by more than 100 experts and patients across 71 countries.
 
The new recommendations cover a range of topics including screening and risk assessment, management of psychological features, models of care, lifestyle management, and assessment and treatment of infertility.
 
Principal Research Fellow from NICM Health Research Institute Associate Professor Carolyn Ee helped to inform the guidelines and said GPs can now use them to provide the best possible patient care.
 
‘When women and adolescents are diagnosed with PCOS, this can be a shock to them, so be gentle and empathetic when delivering the diagnosis,’ she told newsGP.
 
‘PCOS requires a comprehensive approach, so ensure you are covering off on what’s important to the individual patient as well as screening for cardiometabolic risk, anxiety or depression and other psychological conditions, and obstructive sleep apnoea.
 
‘Reassure women that PCOS does not mean they cannot have children. There are highly effective treatments such as letrozole that are available as ovulation inducers.’
 
PCOS is currently the leading cause of infertility in Australia and costs the country around $800 million annually in associated healthcare costs.

The guidelines also identify it as a high-risk condition in pregnancy that needs ongoing screening, but for which there are effective treatments.
 
Despite this, up to 70% of affected women remain undiagnosed globally, according to the World Health Organization.
 
Associate Professor Ee hopes the new research will aid in ending stigma around a PCOS diagnosis, particularly when it comes to weight gain.
 
‘The guideline recommends that healthcare professionals are aware of weight-inclusive practices in management of PCOS,’ she said.
 
‘GPs can use weight-inclusive approaches by promotion of “health at every size”, acknowledging that while higher weight is a risk factor for PCOS and its complications, it is only one indicator of health.
 
‘GPs should ensure that they are offering all women best practice assessment, treatment and support regardless of weight, and it is helpful to remember that there are significant environmental and systems drivers of excess weight.’
 
Researchers are now calling for the syndrome’s name to be changed, saying it is an inaccurate reflection of the condition and its impact on women.
 
To accompany research, the free AskPCOS App has been designed as a free information source to recommend to patients, it currently has more than 45,000 users in 193 countries.
 
Patients and GPs can also find more information of the AskPCOS website.
 
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PCOS polycystic ovary syndrome women’s health