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Working together to act on endometriosis

20 September 2019

With new data confirming the prevalence of endometriosis in Australia, the Royal Australian and New Zealand College of Obstetricians and Gynaecologists’s work to develop guidelines to manage this complex disease is well underway.

The Australian Institute of Health and Welfare (AIHW) recently released figures outlining the prevalence of endometriosis in Australia and how many women end up in hospital as a result.

The data showed that in 2016–17, there were around 34,200 endometriosis-related hospitalisations in Australia. This was a rate of 281 hospitalisations per 100,000 females or around 6 of every 1,000 hospitalisations among females in 2016–17. Of the endometriosis-related hospitalisations in 2016–17, around half (52%, or 146 per 100,000 females) had endometriosis as the principal diagnosis. The remainder had endometriosis as an additional diagnosis only (48%, or 135 per 100,000 females).

The AIHW report confirmed what many have researched, written and talked openly about: the chronic pain, the infertility and the mental health challenges women with this condition face.  A recent edition of the Royal Australian and New Zealand College of Obstetricians and Gynaecologists’s (RANZCOG) O&G Magazine discussed the clinical enigma that is endometriosis.

Tackling the issue

RANZCOG has been tasked by the Department of Health to develop an Australian Clinical Practice Guideline for the Diagnosis and Management Of Endometriosis, in line with the National Action Plan for Endometriosis (the Action Plan). Unlike countries like New Zealand, the United Kingdom or Canada, currently, there are no national evidence-based clinical practice guidelines for the diagnosis and management of endometriosis for use in Australia.

The Endometriosis Expert Working Group, chaired by FRANZCOG Professor Jason Abbott and made up of a multi-disciplinary group including clinical, academic and consumer representatives, held its first meeting in July. The group discussed and agreed on a number of items including the structure and scope of the final guidelines and any accompanying resources.

“In complex diseases such as endometriosis, clinical guidance is imperative for clinicians and patients alike. The group assembled for this clinical guideline represent not only traditional medical and nursing groups, but physiotherapists, complimentary medicine specialists, pain specialist and most importantly representation from consumers,” Professor Abbott said.

“Having had our first face-to-face meeting, it is clear that there is a desire to produce a clinically meaningful document that will impact each level of care and importantly provide direction at a primary care and not just a secondary/tertiary level. We have already made substantial contributions to the direction of what is needed in this guideline and built in for future changes.”

It is expected the guidelines will be finalised by February 2021.

“The National Action Plan in Endometriosis was the first for any disease in this country and this clinical guideline is just one of many steps in realising that Plan,” Professor Abbott said. “Having a living document that is both for now and the future for women with this disease will mean a new direction in Australia and a much more unified and evidence-based approach to care at all levels.  We know that there are holes in the evidence, but highlighting where these are and what we can do to fill these holes to optimise care can only benefit patient and care-giver. There will never be an 'end' and we can always do more research, but at least with this initial step and investment, there is now a beginning.”

Background

The Federal Government’s Action Plan, launched in July 2018, provides a platform for improving the awareness, understanding, treatment of, and research into, endometriosis and associated chronic pelvic pain in Australia. The Action Plan is a high-level document that contains three priority areas that identify actions that will deliver a multipronged approach to endometriosis in Australia. These three priority areas are awareness and education, clinical management and care, and research.



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