A new Monash University-led international partnership has delivered an International Guideline to improve the lives of women with polycystic ovary syndrome (PCOS), a neglected health condition.
The 2023 International Polycystic Ovary Syndrome (PCOS) Guideline and AskPCOS Patient App, led by the Monash Centre for Health Research and Implementation (MCHRI) at Monash University, was launched online and is published in four international journals: Fertility and Sterility, Human Reproduction, Journal of Endocrinology and Metabolism, and European Journal of Endocrinology.The Evidence-based Guideline involved input from thousands of health professionals and women, was developed by more than 100 experts and patients and involved partnership across 71 countries and six continents.
It has 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. PCOS is a neglected, underdiagnosed and under-researched women’s health condition that affects up to 13 per cent of women. It is often misclassified as a reproductive disorder, despite its far-reaching implications for metabolic, psychological, and pregnancy health. PCOS is also the leading cause of infertility in women. In Australia alone, the estimated associated healthcare costs exceed $800 million annually. Monash University’s Professor Helena Teede, a leading global academic in PCOS and the driving force behind the new Guideline, said it highlighted priority areas such as higher weight gain, diabetes and heart disease risk and effective treatments, including for infertility.
“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 opportunity for reach and impact to address these challenges is unprecedented, including in research, education, clinical practice, healthcare and policy.
“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.”
The expanded and updated 2023 International PCOS Guideline is based on the best available evidence, clinical expertise and consumer preferences, and includes 254 recommendations and practice points to promote consistent, evidence-based care to improve women’s health. It builds on the 2018 Guideline, already used by health professionals and those with PCOS in 196 countries.
The new Guideline aims to deliver timely diagnosis, accessible information and education, support and optimal models of care. It also aims to enhance healthcare professional education, awareness and support, while fostering partnerships and shared decision-making with those affected by PCOS globally.
Professor Teede engaged Australian and global expertise, including consultation with more than 100 PCOS clinicians, researchers and lived experience experts, including 39 national and international societies in over 71 countries in six continents.
The International PCOS Guideline Translation Program includes the free women’s digital health translation tool AskPCOS App which has over 45,000 users in 193 countries. PCOS resources for health professionals and consumers are available.
Lorna’s storyLorna Berry, who has PCOS, was a lived experience expert on the Guideline and has shared her journey. She highlights the challenges faced in obtaining a diagnosis and reliable information, which greatly impacted her wellbeing, mental health and fertility options. Lorna firmly believes that no woman should go undiagnosed and unsupported. “Living with PCOS is challenging enough, but the struggle to find reliable information feels like an uphill battle,” she said.
“It’s disheartening when every corner you turn, there’s someone trying to sell a miracle cure.“All I want is trustworthy information that deals with my concerns and answers my questions. It just adds to the frustration and sense of hopelessness that can go with having PCOS.”
As a teenager, Lorna struggled with fluctuating weight, despite a healthy lifestyle, and was told by her doctor to diet. In her 20s, Lorna knew something wasn’t quite right, and it took her years to conceive her first child.“I fought for my PCOS diagnosis. It affected all aspects of my life, family, fertility, wellbeing and lifestyle. Empowering women so they can advocate and educate doctors and other health professionals is of utmost importance. We need to make sure that the next generation doesn’t go undiagnosed and unsupported.”
This work is funded by the National Health and Medical Research Council (NHMRC) Centre of Research Excellence in Women’s Health in Reproductive Life (CRE WHiRL) and the Medical Research Future Fund. The Guideline was co-founded by the following partner organisations:
- American Society for Reproductive Medicine
- Endocrine Society
- Society of Endocrinology
- European Society of Human Reproduction and Embryology.
We also acknowledge the input of 34 other collaborating organisations and consumer groups internationally. A list of partners can be found here