Push to treat PCOS as multi-system disease

5 minute read

A new Australian-led international guideline for treating the condition is out now and should prompt curriculum updates.

A Monash University-led international partnership has just launched a new evidence-based guideline to treat women with polycystic ovary syndrome.

Leading global academic Professor Helena Teede, of the Monash Centre for Health Research and Implementation at Monash University, was the driving force behind the new guideline.

On the eve of the launch she told The Medical Republic the guideline was designed to bring big changes for women with PCOS and greater guidance and tools for their health professionals, particularly GPs.

“It’s been a long, long, long time and a huge amount of work,” she said.

“But the thing that’s going to go on from here is there’s going to be a best practice framework, which highlights speciality services for GPs and when to refer. There’s a whole lot of more innovative design in the app, which allows shared decision making. And there’s more tools coming, which will be even more exciting.”

The 2023 International Polycystic Ovary Syndrome (PCOS) Guideline has also been published in four international journals including Fertility and Sterility, Human Reproduction, the Journal of Endocrinology and Metabolism, and the European Journal of Endocrinology.

The development of the 242-page guideline has been a monumental effort spanning years, input from thousands of health professionals and women, and the involvement of than 100 experts and patients and involved partnership across 71 countries and six continents.  It includes 254 recommendations and practice points to promote consistent, evidence-based care to improve women’s health.

Profesor Teede said one of the greatest problems with PCOS stemmed from its name, which she said implied it was only a disease of the ovaries.

“We are doing a lot of work to try and change the name,” Professor Teede said.

“This is a common, important, poorly diagnosed and managed multi-system women’s health conditions. And we just need to move past the polycystic ovaries into recognising that and diagnosing and helping our patients.”

Another major issue for doctors was the lack of education and training. Professor Teede said PCOS was taught in obstetrics and gynaecology but was commonly limited to an hour-long lecture.

“One of the things we’ll be doing from this is writing to medical deans and education teams across the country and internationally about the need to update their curriculum based on this information,” she told TMR.

“It should be embedded right through the curriculum, from the basic pathophysiology of common diseases because it is a common disease: it’s 50% more common than diabetes.

“So it needs to be absolutely front and centre in terms of common diseases.”

Professor Teede said the new guideline built on the previous one released in 2018 which was used in almost 200 countries around the world.

“It’s got gender-inclusive language, it considers weight stigma, it does a lot on models of care, it talks a lot about shared decision making,” she said.

“And the feedback we got when we put this out was wow, this is a guideline for us. And they loved it, absolutely loved it, and that’s from around the world.”

The guideline also includes a simple diagnostic tool designed specifically for GPs.

“Diagnosis is a little bit tricky,” said Professor Teede.

“It [the tool] gives them a really simple metabolic screening algorithm when to test for what and it also highlights the different features they need to consider.”

And the patients haven’t been left out. The AskPCOS app has been designed with patients by patients around their top questions and answers most of the questions and then drops out the ones they need to discuss with their GP. The app already has more than 45,000 users in 193 countries.

Professor Teede said GPs were well placed to help diagnose and care for patients with PCOS, with input from specialists and allied health professionals as required.

She said she hoped the new guideline and diagnostic tool would help improve GPs’ confidence in managing their PCOS patients and see the condition as a multi-system chronic condition that went far beyond ovaries.

“Please think of this as a system-wide condition that affects one in eight of your patients,” she said.

“Please recognise that it has reproductive features, as it has psychological, metabolic diabetes and heart disease features as well that really need attention, and that it’s complex.”

The guideline includes recommendations for diagnosis, lifestyle, wellbeing, fertility and treatment as well as improved care and support. It aims to address the priority needs of those with PCOS and is supported by significant freely available resources for women and their healthcare providers, to optimise health outcomes.

Significant changes include revised diagnostic criteria involving hormone tests instead of ultrasound, and recognising features beyond reproductive health to weight, diabetes, heart disease and mental health. It also addresses the need for new approaches to care, personalised healthcare experiences, evidence-based therapies, and optimised pregnancy care.

“The guideline highlights that understanding of the unique challenges facing those with PCOS must be addressed at all levels, so that women and girls can have the healthcare and outcomes they deserve,” Professor Teede said. 

“The guideline busts myths around higher weight and lifestyle and seeks to support those with PCOS and reduce stigma. Australians are exposed to an environment that drives rapid weight gain due to failures in policy, regulation and financial constraints, with women with PCOS at even higher risk.

“The focus is often on ineffective individual behavioural solutions, further impacting health and fertility. Limited access to effective therapies and fertility services leaves women with poorer health outcomes, especially underserved populations, presenting a health equity issue.”

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