National Polycystic Ovarian Syndrome Alliance

Professor Helen Teede of the Jean Hailes Foundation for Women's Health, and Professor Rob Norman, Director of the Robinson Institute have led an Australian Initiative to form a National Alliance on Polycystic Ovarian Syndrome (PCOS) and have successfully secured considerable government funding to support this initiative over the next 3 years.

The initiative brings together multidisciplinary clinicians, women with PCOS, researchers and government. The PCOS Australian Alliance is designed to provide a single voice for Polycystic Ovarian Syndrome and has agreed on a vision to improve the lives of Australian women with PCOS through education, research and evidence based health care.

The initiative worked closely with Minister Roxon and the Department, with the Australian Government committing to $1,134,000 over three years to fund the National PCOS Alliance, specifically for the development of national evidence based guidelines in PCOS and to support education/translation for consumers and health care professionals.

Professor Teede, "applauds Minister Roxon's recognition of the important contribution the National PCOS Alliance can make to both women's health and preventive health agenda in Australia."

PCOS is a debilitating condition affecting 11% of Australian women of reproductive age and 21% of indigenous women.

Australian research shows that 89% of women with PCOS saw more than one health professional before their diagnosis was made, 49% took greater than six months to have a diagnosis confirmed and 41% were very dissatisfied with the manner in which they were informed of their diagnosis.

Nearly 62% of women were not given educational resources after their diagnosis. Furthermore, little information is given about lifestyle management or complications of PCOS even though 57% of women were confident their lifestyle management will improve their condition.

Although the answers are emerging from research, they have not yet been translated into practice. International consensus and guidelines on PCOS are limited. The first task for the National PCOS Alliance is the development of the first national, and in many areas, first international evidence-based guidelines for diagnosis and care of women with PCOS.

Professor Rob Norman says, "this is the first time the federal government has recognised the importance of the condition. The Alliance will promote collaboration between researchers and clinicians to ensure we work together to solve many issues surrounding this common disease."

Polycystic Ovarian Syndrome (PCOS):

PCOS is a combination of features, which can include polycystic ovaries (multiple follicles on the ovaries), high levels of the androgen hormones (including testosterone), acne, excess body and facial hair, scalp balding, obesity, menstrual irregularity and infertility.

• Prevalence: PCOS is one of the commonest conditions in Australian women affecting 11% of reproductive-aged women. The prevalence of PCOS will likely increase in line with the increasing prevalence of obesity in Australia.
• In indigenous Australian women the prevalence is 21%.
• PCOS is the most common cause of anovulatory infertility, 26% of infertility requiring IVF therapy is PCOS related. Once pregnant, PCOS places women at higher risk of pregnancy-related diabetes and pregnancy complications.
• Other important long-term implications include a 4-7 fold increased risk of diabetes, increased cardiovascular risk factors and increased cardiovascular disease.
• Challenges to feminine identity and body image due to obesity, acne and excess hair compromise quality of life in women with PCOS, and social stigmas around symptoms impact advocacy.
• Increased rates of depression and anxiety.
• The economic burden of PCOS is approximately $400 million per year in Australia (anovulation 31%, infertility 12% and PCOS related DM2 40% of total costs), representing a major health and economic burden. An economic evaluation has advocated PCOS screening and early management justified by the potential to ameliorate or prevent serious sequalae including infertility and diabetes