Lessons from implementing the Australian National Action Plan for Endometriosis

Mike Armour, Jodie Avery, Mathew Leonardi, Van Niekerk, Leesa, Leesa Van Niekerk, Marilla Druitt, Marilla L Druitt, Melissa A Parker, Melissa Parker, Jane E Girling, Brett McKinnon, Antonina Mikocka‐Walus, Antonina Mikocka-Walus, Cecilia H M Ng, Cecilia Ng, Rebecca O'Hara, Rebecca O’Hara, Donna Ciccia, Katherine Stanley, Subhadra Evans
Reproduction & fertility · 2022 · vol. 3(3) , pp. C29–C39 · doi:10.1530/raf-22-0003 · PMID:35928674 · PMC9346321 · W4283748459
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This paper discusses experiences implementing Australia's National Action Plan for Endometriosis, highlighting improvements in awareness, care, and research while noting ongoing challenges in diagnosis and symptom management.

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This article reviews the Australian National Action Plan for Endometriosis (NAPE) and describes the financial and healthcare access burdens experienced by people with endometriosis in Australia, situating these issues within Australia’s care pathways and health financing systems. It reports high population-level illness-burden estimates (about AUD $9.6 billion per year) and highlights qualitative findings from a community sample (n=133) and patient/community forums, where participants described major out-of-pocket costs, debt (including selling homes), and workplace impacts, alongside generally insufficient targeted funding despite NAPE investment. The paper’s limitation is that much of the evidence is drawn from cited literature and narrative/community descriptions, including unpublished qualitative survey data, rather than a dedicated comparative effectiveness analysis of NAPE implementation. This paper is centrally about endometriosis — it focuses on lessons from implementing Australia’s National Action Plan for Endometriosis and the associated economic and access inequalities.

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Abstract

ABSTRACT: Endometriosis is a common yet under-recognised chronic disease with one in nine (more than 830,000) women and those assigned female at birth diagnosed with endometriosis by the age of 44 years in Australia. In 2018, Australia was the first country to develop a roadmap and blueprint to tackle endometriosis in a nationwide, coordinated manner. This blueprint is outlined in the National Action Plan for Endometriosis (NAPE), created from a partnership between government, endometriosis experts and advocacy groups. The NAPE aims to improve patient outcomes in the areas of awareness and education, clinical management and care and research. As researchers and clinicians are working to improve the lives of those with endometriosis, we discuss our experiences since the launch of the plan to highlight areas of consideration by other countries when developing research priorities and clinical plans. Historically, major barriers for those with endometriosis have been twofold; first, obtaining a diagnosis and secondly, effective symptom management post-diagnosis. In recent years, there have been calls to move away from the historically accepted 'gold-standard' surgical diagnosis and single-provider specialist care. As there are currently no reliable biomarkers for endometriosis diagnosis, specialist endometriosis scans and MRI incorporating artificial intelligence offer a novel method of visualisation and promising affordable non-invasive diagnostic tool incorporating well-established technologies. The recognised challenges of ongoing pain and symptom management, a holistic interdisciplinary care approach and access to a chronic disease management plan, could lead to improved patient outcomes while reducing healthcare costs. LAY SUMMARY: Endometriosis is a chronic disease where tissue like the lining of the uterus is found in other locations around the body. For the 830,000 people living with endometriosis in Australia, this often results in an immense burden on all aspects of daily life. In 2018, Australia was the first country to introduce a roadmap and blueprint to tackle endometriosis in a nationwide coordinated manner with the National Action Plan for Endometriosis. This plan was created as a partnership between government, endometriosis experts and advocacy groups. There are several other countries who are now considering similar plans to address the burden of endometriosis. As researchers and clinicians are working to improve the lives of those with endometriosis, we share our experiences and discuss areas that should be considered when developing these national plans, including diagnostic pathways without the need for surgery, and building new centres of expertise in Endometriosis and Pelvic Pain.
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The

The following are the authors recommendations and are based on the principles of the NAPE and the National Strategic Action Plan for Pain Management ( Australian Government Department of Health 2021 b ) and include changes to the MBS system, the establishment of Centres of Expertise and pain education for healthcare providers and the community:

Author

All authors were involved in the conceptualisation of the study, M A and S E led the writing of the manuscript with all authors contributing to the first draft, and all authors contributed to, and agreed upon the final manuscript.

Funding

This work did not receive any specific grant from any funding agency in the public, commercial or not-for-profit sector.

Clinical

Endometriosis-related pain needs to be recognised as a complex condition for the purposes of MBS rebates. Currently, the MBS provides the chronic disease management plan, which can be used to access pelvic physiotherapy and other allied healthcare services, and the Mental Health Treatment Plan, which can be used to access 20 psychology sessions in a year to support the mental health needs of people with endometriosis. In addition to these, a new MBS item is needed for pain education by medical, nursing or allied health practitioners, similar to the diabetes educator model which is already funded under the MBS ( Australian Government Department of Health 2021 b ). This item could be used to support patients to access individual services and group services, to be delivered by an interdisciplinary team, with telehealth services available. In addition, MBS rebates need to incentivise gynaecologists to provide biopsychospiritual care to patients, rather than incentivising surgery alone. Centres of Expertise should be established, where evidence-based interdisciplinary treatment of pelvic pain and endometriosis is offered by trained and experienced pain specialists ( Australian Government Department of Health 2018 ). Such Centres offer advantages to healthcare providers and patients, such as financial incentives by increasing cost efficiencies and the provision of world -lass care by attracting expert clinicians who use innovative tools and techniques to improve patient outcomes, ultimately performing to a higher standard than traditional settings ( Elrod & Fortenberry 2017 ). Centres of Expertise can also offer telehealth to support the needs of individuals in rural and remote communities. Given the financial burden of presentations and hospitalisations for acute and chronic pelvic pain and endometriosis in Australia ( Australian Institute of Health and Welfare 2019 ), Centres of Expertise for endometriosis represent the logical next step. Most healthcare professionals, including medical students, are offered minimal training in pain medicine ( Shipton et al. 2018 ). To support the requirements of Centres of Expertise, specialised training in endometriosis and chronic pelvic pain is required. Currently, training models are being offered by The Australian College of Nursing in pelvic pain and endometriosis ( Australian College of Nursing (ACN), Undated ) and the Pelvic Pain Foundation of Australia provides training via seminars to all health professionals ( The Pelvic Pain Foundation of Australia 2021 a ). The Faculty of Pain Medicine within the Australian and New College of Anaesthetists also offers Pain Medicine fee-based online training for all health professionals consistent with the National Strategic Action Plan for Pain Management ( Australian and New Zealand College of Anaesthetists 2021 ). All health practitioners and carers should be trained in pain management to improve their understanding of pain and associated care plans and practices. Part of the challenge is increasing awareness of these options for health professionals.

Research

While improved access to expert clinicians and interdisciplinary teams is vital, so too are collaborations between universities, research organisations, governments, and businesses in Australia to undertake highly innovative and potentially transformational research. The founding of an Australian Research Council Centre for Excellence or an NHMRC funded Centre for Research Excellence would support interdisciplinary, collaborative approaches to address the most challenging and significant research problems. While such Centres exist for other reproductive health conditions including polycystic ovary syndrome, no such Centres exist for Endometriosis and Pelvic Pain.

Awareness

Finally, while awareness of endometriosis and its symptoms is increasing amongst the general population, and this appears to be contributing to the reduction in diagnostic delay ( Armour et al. 2020 b ), overall menstrual health literacy is still relatively low in Australia ( Armour et al. 2021 b ). Therefore, school programmes such as PPEP Talk® are vital, ensuring that parents, a very common source of information on menstruation ( Armour et al. 2019 b ), also have access to accurate, culturally appropriate information so that they can pass this on to their children. In addition, the use of simple screening tools such as PIPPA may encourage young people to seek medical help when needed, rather than feeling their pain is ‘normal’.

Challenges

The historical paradigm through which endometriosis is managed adds to the cost burden. Still considered a single disease, unified through the histological presentation of cells within tissue excised from the peritoneal cavity, the heterogeneity in patient presentations, symptoms, lesion appearance and eventual outcomes is seldom recognised when designing patient management pathways ( Colgrave et al. 2021 ). This results in a trial-and-error approach to settle on the clinical management acceptable to the patient ( Poulos et al. 2019 ). The prevailing model of endometriosis care in Australia reflects this westernised biomedical approach, with a single provider caring for a person living with the disease. The solo-provider model has been associated with persisting symptoms, long delays in diagnosis, repeated surgeries and low care satisfaction ( Agarwal et al. 2021 ). As few as 24% of Australian women with endometriosis are satisfied with the management of their condition, with barriers to accessing interdisciplinary care that addresses functioning beyond infertility and pain one of the main reasons for dissatisfaction ( Evans et al. 2021 ). A blinkered view of endometriosis as the sole cause of pelvic pain means that coinciding and comorbid conditions are left unrecognised and untreated, with the misconception that previously treated endo ‘is back’. This can lead to the unnecessary risks and cost burden of repeat surgeries that do not treat myofascial pain or microbiome issues, as examples. The complexity of endometriosis increases the imperative for comprehensive screening and appropriate, affordable treatment options. Issues with funding and reimbursement are also significant barriers to adequate and affordable endometriosis care. In Australia, individuals diagnosed with endometriosis may be eligible to access a general practitioner-led chronic disease management plan (CDMP) ( Australian Government 2021 ), designed to facilitate coordinated care for people with chronic diseases. As part of the CDMP, individuals can access up to five Medicare-subsidised visits to a range of allied health services (e.g., physiotherapy, psychology, dietitian). Although endometriosis meets the criteria for a chronic disease in Australia ( O’Hara et al. 2018 ), only 15.4% of surveyed endometriosis patients reported having a CDMP ( O’Hara et al. 2020 ). Although this may initially appear to indicate a significant untapped opportunity for those with endometriosis to access interdisciplinary care, the availability of CDMPs may not remove the financial barrier to accessing affordable treatment for many. General practitioners remain the gateway to accessing allied health services, as the coordinators of the plan, and require a knowledge of available qualified allied health practitioners. Furthermore, the availability of five sessions, across all allied health fields, may limit the individual’s ability to access regular effective management due to financial burden as the subsidy provided is often ~50% or less of the total cost. The inclusion of various treatment providers in the CDMP promotes an interdisciplinary approach where the care team consists of individual providers, across multiple treatment locations, rather than one co-located care team. The inclusion of individual treatment providers may not facilitate the shared care arrangement that facilitates effective and coordinated treatment. In the Australian public healthcare system, gynaecology clinics have historically focussed on investigations for endometriosis, offering hormones and surgery, rather than interdisciplinary care. This is likely in part due to the structure of the Medicare Benefits schedule (MBS) in Australia, which is a list of the medical services for which the Australian Government will pay a rebate to provide patients with financial assistance towards the costs of their medical services. The MBS does not adequately fund interdisciplinary pain management and rewards doctors for performing surgery over talking to their patients. For example, in gynaecology, MBS rebate amounts are 200 times more for surgery vs consulting ( Australian Government Department of Health 2021 a ). Gender inequality issues are also present in the current MBS structure, impacting people with endometriosis. For example, the pelvic ultrasound rebate amount (Item 55065) is less than one to scan a scrotum (Item 55048) and no MRI rebate exists for the investigation of a woman’s pelvic pain.

Conclusion

The NAPE is an important milestone in the diagnosis and management of endometriosis in Australia however much is left to be done. While the diagnostic delay in Australia is decreasing over time, the emphasis on the need for laparoscopic visualisation as the sole source of diagnosis may be hindering access to vital treatment. Imaging, especially via ultrasound and in the future with artificial intelligence assistance, maybe a key technology that can be enlisted to help reduce this delay. Once diagnosed, access to Centres of Expertise, with highly trained professionals, adequately subsidised by the MBS, and providing interdisciplinary care are crucial steps forward. Given the significant outofpocket cost that endometriosis already exerts, access to adequate symptom management is an important equity issue. Finally, new tools such as PIPPA, and programmes such as PPEP Talk® may help reduce the diagnostic delay further by improving menstrual health literacy and encouraging health-seeking behaviour.

Declaration

Mathew Leonardi is an Associate Editor of Reproduction and Fertility . Mathew Leonardi was not involved in the review or editorial process for this paper, on which he is listed as an author. M A is the Chair of endometriosis Australia’s Research Committee and incoming Chair of the Endometriosis Australia Clinical advisory board. They do not receive any renumeration for this role. L V N is a member of Endometriosis Clinical advisory board. They do not receive any renumeration for this role. M L has received grants from the Australian Women and Children’s Research Foundation and AbbVie, and speaking/writing honoraria from GE Healthcare, Bayer, AbbVie and TerSera, unrelated to the current work. M D is a councillor for the Royal Australian and New Zealand College of Obstetrics and Gynaecology (RANZCOG). They do not receive any renumeration for this role.

Introduction

As researchers and clinicians are working to improve the lives of those with endometriosis, this piece aims to highlight the significant financial burden experienced by the large number of affected individuals in our communities. We focus on the National Action Plan for Endometriosis (NAPE) ( Australian Government Department of Health 2018 ), developed as an initiative by endometriosis advocacy organisations ( Australian Coalition for Endometriosis (ACE) 2018 ), with government support, to help support new advances in diagnosis and treatment. We outline the successes thus far and suggest approaches to help tackle the still ongoing health inequalities experienced by those with endometriosis that may be useful both to those in Australia and to the number of countries that have announced an intention to develop a similar plan for endometriosis. Pelvic pain is an umbrella term for a multitude of conditions related to the bladder, bowel, reproductive organs, musculoskeletal and peritoneal spaces of the pelvis. Under this umbrella sits endometriosis, a condition where tissue similar to the lining of the uterus is found in various locations outside the uterus ( Johnson et al. 2017 ). Endometriosis affects around one in nine women, transgender, non-binary and gender-diverse people assigned female at birth in Australia by the age of 44 ( Rowlands et al. 2021 ), with an estimated diagnostic delay of between 6.4 and 8 years ( Armour et al. 2020 b , O’Hara et al. 2020 ). Box 1 outlines the care pathway for those with endometriosis in Australia. The disease can negatively impact all aspects of an individual’s life, including work, education, sexual and social relationships, self-identity and body image ( Moradi et al. 2014 , Melis et al. 2015 , Armour et al. 2020 b , Van Niekerk et al. 2021 ). Endometriosis has been associated with a loss of productivity in the workplace ( Armour et al. 2019 a ), and it is not uncommon for people with endometriosis to have to work reduced hours due to their symptoms; over one in ten people with endometriosis have reported losing their job because of the disease ( Armour et al. 2020 b ). While there is variation across the different states and territories in Australia (including if the individual is living in an urban, rural or remote area), in general, gynaecologists typically lead the care for endometriosis in Australia, while the condition is monitored by general practitioners (GPs) ( Young et al. 2016 ). However, this varies depending on access to gynaecology services, and in some rural or remote locations, the majority of care may be provided by the GP. There is currently a lack of information on the pathways via which those with endometriosis access the Australian healthcare system but people with endometriosis report often having to see several general practitioners and gynaecologists prior to getting diagnosis and treatment for their endometriosis ( Armour et al. 2020 b , Evans et al. 2021 , Hawkey et al. 2022 ). Australia’s national healthcare scheme called Medicare provides access to free health services in a public hospital setting. Australian residents can opt to pay out of pocket for private health insurance with 44.9% of the population choosing this additional private health cover as of December 2021 ( Australian Prudential Regulation Authority 2022 ). When purchasing private health insurance, consumers have the option to purchase hospital cover only, ‘extras’ or combined hospital and ‘extras’ cover. This ‘extras’ cover usually includes cover for allied health services such as physiotherapists, dieticians and acupuncture, which is otherwise not normally covered by the Medicare system. Private health cover, irrespective of the level of cover, provides access to private hospitals and ‘upgraded’ facilities in public hospitals such as access to single-occupant rooms. Some gynaecologists and GPs charge no out-of-pocket fees (so called ‘bulk billing’); however, most will levy a fee or surcharge on top of the Medicare rebate. In general, when seeing a health professional who does not offer bulk billing, the consumer pays the full fee upfront and then the Medicare rebate portion is then refunded directly into their bank account.

Self Management

Given the ongoing challenges of pain and symptom management, it is perhaps unsurprising that many people are choosing to engage in self-management ( Armour et al. 2019 c , O’Hara et al. 2020 ) with as many as 89% of Australian women with endometriosis using complementary and self-care approaches to manage pain ( Evans et al. 2021 ). People with endometriosis often need to seek regular care from general practitioners, medical specialists (e.g. gynaecologists), allied health providers (e.g. mental health practitioners and physiotherapists) and complementary therapists (e.g., massage therapists and acupuncturists) ( O’Hara et al. 2020 ). Similarly, McKay et al. (2021) found that individuals with symptomatic endometriosis reported engaging in multiple management options including pelvic physiotherapy (26%) and psychology (24%), with only 8% of the sample indicating that they were not engaged in active treatment ( McKay et al. 2021 ). In addition to seeking out support from health professionals, many of those with endometriosis are also self-managing by changing diets ( Armour et al. 2021 c ) or using cannabis medicinally ( Sinclair et al. 2019 ). All of these self-management options come with a cost ( Malik et al. 2022 ), further adding to the cost burden on individuals and their families.

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Condition tags

endometriosischronic_pelvic_pain

MeSH descriptors

Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Adult Adult Adult Adult Adult

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