New Australian led global guidelines for the diagnosis and treatment of PCOS have been published today in three international journals, to improve outcomes for women living with this condition.
Polycystic Ovary Syndrome (PCOS) is the leading cause of infertility and affects up to 13% of women of reproductive age in non-Indigenous women, and one in three Indigenous women. It is a complex condition with challenges in making an accurate diagnosis.
Monash University’s Professor Helena Teede led international engagement of more than 3,500 consumers, and health professional from 71 countries, that identified major gaps for those with this condition. This included delays of up to two years in diagnosis and a lack of adequate information for women with PCOS, underpinned by a paucity of evidence-based diagnosis and treatment guidelines.
“PCOS is a multi-faceted condition, with reproductive, metabolic and psychological features which often mean diagnosis is delayed, treatment is often not holistic and opportunities for prevention, treatment and improved health outcomes including in infertility and pregnancy health are missed,” said Professor Teede.
Professor Teede heads the national NHMRC Centre for Research Excellence in PCOS with Professor Robert Norman AO from The University of Adelaide’s Robinson Research Institute. This CRE led the development of these new guidelines, titled: International Evidence-Based Guideline on Assessment and Management of PCOS.
The guidelines were developed with 37 societies and consumer groups from 71 countries, included 70 experts, health professional and women with PCOS, who met 20 times over a 15-month period.
“It is now vital to get the key guideline messages out to as broad a range of health professionals and women with PCOS as possible to translate this work into improved health outcomes for affected women,” said Monash University’s Associate Professor Jacqueline Boyle and Dr Rhonda Garad who lead international translation of the guidelines.
Polycystic ovarian syndrome, or PCOS, is an endocrine or hormonal disorder involving excess levels of the hormones insulin and androgen, causing the common clinical features of the condition:
- Excess facial and body hair, acne or scalp hair loss
- Impaired ovulation or egg development in the ovaries leading to irregular cycles, reduced fertility and pregnancy complications
- Increased risk of weight gain, diabetes and other metabolic features
- Increased anxiety, depression and reduced quality of life
A key message from the guidelines is to reassure women that these features can be prevented and or treated, including infertility, once identified.
Initial research found that the assessment and management of PCOS is inconsistent, with women generally dissatisfied with care. The guidelines and translation program aim to address this through the refinement and increased accuracy of diagnostic criteria; encouraging simpler, more appropriate testing; an increased focus on education of both patient and health care professional; lifestyle modification, (for instance obesity increases the risk and severity of PCOS); improving emotional wellbeing and quality of life, and increasing the use of evidenced based medical therapy and cheaper and safer fertility treatment.
To increase the health literacy of women affected by PCOS, Monash University has created a PCOS app which provides information in English, and is being translated into Mandarin, Hindi, Vietnamese and Spanish.
A GP Toolkit and care plan has been developed to assist in the rapid and accurate diagnosis and treatment of the disease. This and a suite of other consumer and health professional resources are designed to get the evidence based messages out there to improve diagnosis, care and health outcomes.
The guideline will be published today in three international journals: Clinical Endocrinology; Human Reproduction and Fertility and Sterility and is an unprecedented example of international collaboration to improve health outcomes, Prof Teede said.
These and other resources are freely available from https://www.monash.edu/medicine/sphpm/mchri/pcos/resources