Greater awareness leading to earlier endometriosis diagnoses

[Music] Welcome to Behind the Data, a podcast by the Australian Institute of Health and Welfare. Each episode we take you beyond the numbers to uncover the health and welfare data stories shaping Australia. We acknowledge that this recording was made on the lands of Nunnawal and Nambri peoples and honour their enduring and unseated connection to country, waters and skies. We pay our deepest respect to their elders past and present and extend that respect to all Aboriginal and Torres Strait Islander peoples listening. Hello and welcome to Behind the Data, I'm Lauren. In this episode we'll be talking about something that's been dominating news headlines of late, a condition that impacts thousands of Australian girls and women. And Demetriosis is an inflammatory condition that can be painful, affect fertility and lead to reduced participation in school, work and social activities. March is Endometriosis Awareness Month, providing an opportunity to speak about the deep reaching impact of this potentially debilitating health condition. Joining me today at two of the institute's data experts, Richard Hurley, head of the Chronic Conditions Unit and Melissa Wilson, senior data analyst. And we also have Donna Chitchap, Deputy Chair and Co-Founder of Endometriosis Australia. Thank you for coming along to discuss the valuable work going on to develop an analysed data on this prevalent issue and the way this data supports positive, real-world outcomes. Thanks Lauren. Thank you for having me. We know Endometriosis is a historically under-recognised condition that can take between six to eight years between the onset of symptoms and diagnosis. Richard, it seems, the majority of women with endometriosis have suffered in silence for a long time. Do we know what causes endometriosis and why diagnosis of the condition have increased over recent years? Unfortunately, the cause of endometriosis is not clear, Lauren. Although a family history appears to increase the risk of developing the condition, in more recent times, prevalence estimates show women are being diagnosed with endometriosis at earlier stages, which may reflect increase the awareness among the general public as well as health professionals, leading to increased diagnosis. We can see from longitudinal data comparing two different cohorts of women, one born between 1989 and 1995, and one born between 1973 and 1978. By age 31, around 9% of women in the younger cohort were diagnosed with endometriosis compared with 7% of women in the older cohort at the same age. Donna, creating awareness is part of endometriosis Australia's work. It must be satisfying to see these efforts are making a real difference in leading to heightened diagnosis. Yes, beyond the heightened diagnosis, we know that the diagnostic delay has reduced. It's still way too long for patients. The awareness has helped reduce that. Diagnostic delay, but we still have a long way to go. It is nice to know that over 50% of the community now understands or now has heard the word endometriosis. And so for patients and people living with endometriosis, it's that their family and friends and work colleagues might have a better understanding that it's not just a period of pain, it's not just someone being overly dramatic. And it's not all in their head that there is something actually wrong. So there is a few different aspects to creating awareness and that better understanding, that broader knowledge of endometriosis getting out in the community is a big help. Now looking at data produced by your team, it's quite eye-opening to see just how many girls and women with endometriosis are receiving hospital care. Can you tell us a bit about this data? Sure. We know that in 2022-23, there were 44,200 endometriosis-related hospitalisations. And about half of these hospital visits endometriosis was the main condition requiring hospital care, while the other half reported endometriosis as a coexisting condition which significantly affected the patient's care. I can see the annual number of endometriosis-related hospitalisations has been steadily increasing over the past decade or so. Up 54% since 2012 to 13. Is this in line with expectations? That's right Lauren. There's been an increase in both the number of hospitalisations and the rate which accounts for population growth. In fact, the rate of endometriosis hospitalisations has increased by 34% over the last decade or so. That's compared with a 12% increase in all hospitalisations among girls and women. This trend has been most striking among those age 20 to 24, with the rate of endometriosis related hospitalisations doubling from 325 to 650 hospitalisations per 100,000 females in that period from 2012-13 to 2022-23. An increase of 34% in endometriosis-related hospitalisations really does carry some weight. Richard, your team has looked for the reasons behind that increase and why women in that age range of 20 to 24 years are impacted so greatly. We have, while there could be several factors at play, again the growing awareness of endometriosis both in the community and among health professionals in recent years is a likely influence here. Greater awareness is leading more people to seek a diagnosis and access treatment, including at a younger age than they might have a decade ago. Donna, would you say that greater awareness has been the main driver of increased diagnosis in hospital visits? Awareness has been a good driver for increasing the diagnosis and understanding of endometriosis. There has been, I think, also a second fold being two patients or people that are living with a disease that they get a validation. So that creating the awareness, they're not listening to those old families, that it's the family curse, that it's just normal to be in pain, that they are seeking help. So I think the awareness creates that increase of seeking help, and which hopefully then leads to a better diagnosis rate. And I understand that the Institute's data reveals that more than nine in ten hospitalisations involved at least one procedure in 2022 to 23. Yes, that's right, around 95% of endometriosis-related hospitalisations involved at least one procedure. The most common procedure occurring in 45% of hospitalisations was laparoscopic excision of pelvic cavity lesion, a keyhole procedure to remove lesions which can include endometrial tissue. Surgery for more severe cases, such as removing the uterus or both phylopean tubes, are less common, but still occurring around 13% of these hospitalisations. So these figures we've just discussed relate to general hospital admissions, what about emergency department presentations? There were around 4,800 endometriosis-related emergency department presentations in 2023 to 24, which equates to around 35 presentations per 100,000 females. And three-quarters of these emergency presentations were triaged as needing to be seen within 30 minutes or less. So although that number of presentations may seem small, that really highlights the severity of this condition. It is important to note as well that we do expect the total volume of care provided for endometriosis patients in an emergency department is actually greater than those 4,800 presentations. In the same year among women aged 15 to 44, there are around 35,000 presentations for abnormal vaginal or uterine bleeding and around 160,000 presentations for abdominal pain. So some of these girls and women may well go on to be diagnosed with endometriosis or a related chronic pain or menstrual condition. Mel, you mentioned related conditions. Richard, I imagine experiencing multiple conditions could really compound the impact on a person's life and maybe even create challenges with diagnosis and treatment. Yes, it can learn. People who are living with two or more chronic conditions at the same time, also known as multi-morbidity, often have more complex healthcare needs and reports poorer overall quality of health. Unfortunately, we don't have national data on how common this is for people with endometriosis. But research from Australia and internationally has found that this condition is associated with a range of reproductive inflammatory, autoimmune and chronic pain conditions as well as increased risk of certain cancers. Understanding the impact this has on a person's care needs, their pathway through the health system and their health outcomes is an important focus for us in building a strong evidence base. Donna, I'm hearing just how severely a diagnosis can impact someone, not only physically, but from a mental perspective when trying to manage a job, kids, family, demands, all of the other things that can spring up in life. Can you touch on lived experience? for us, you must see and hear stories each and every day in your role. There is not one aspect of a person's life that endometriosis doesn't touch. We have just heard about a young girl who's 14 and she's missed 80 days in school last year. You know, that mum and family are now dragged in into one of these endometriosis. There's not one part of their lives that isn't impacted by endometriosis for a person trying to earn a living. It is impacting them at work because there's presentism, absenteeism, loss of income. We know that people get passed over for promotions. We know that people are dropping out of playing sports because of endometriosis. How does data collect it and analysed by the Institute help support these efforts? That data is a godsend for us because it's one reference point for us to go back to. We are always invited to collaborate when they're formulating the new information to go out, which is great because the lived experience gets to have a touch on their information coming through and it is a really good reference point for us as an organisation that we can share when we are sharing statistics, we can reference back to the institute and say this is where it's coming from. And while there is no no in cure for endometriosis, there are treatments available to manage the associated symptoms. What is some of the current main treatment options available Donna? There is no one silver bullet that's probably the best way to say it. We have got medical treatments but currently that is something a trial and error that each patient has to try to see if it works for them which is timely, costly and also can be very traumatic because sometimes they don't agree with a person. We also have surgical options and so we have that is one part of the management and it's an important part for many. It also plays a role in the validation so that helps with mental health because we are often dismissed with this disease and then we know the diagnostic delay but at least six and a half years, that six and a half years being told it's all in your head and that you need, you know, it's just your anxiety. So that's surgical validation and histopathology validation is a very, plays a very important role not to mention removing the disease but I want to stress that being disease-free as in all the disease being removed doesn't necessarily equate to pain-free and it doesn't equate to the fact that the disease has a reoccurrence rate so it's not a fix but it is one of our tools in our toolbox. It appears endometriosis is more prevalent than most people may think which leads to an obvious question. How much is spent on endometriosis and has that changed with the rise in prevalence and hospitalisations? Total health system spending on endometriosis has more than doubled from 142 million in 2013-14 to 329 million in 2023-24. I should add these estimates only include direct treatment costs from sources like the Australian and state and territory governments, private health insurance and aid or pocket payments by patients where spending can be attributed to the treatment of endometriosis. We also know there are significant indirect costs associated with endometriosis. Living with this condition can affect a person's quality of life, their ability to work or do the activities they enjoy which has an impact on both them individually and as a society. And as well as working to raise awareness, Donna and Endometriosis Australia funds research to improve diagnosis and treatment of this condition. We can help fund new and novel projects that might come up and it's often to encourage new researchers into the space. That was what it was originally designed to do and so we give out these small grants to different new researchers. It might be a PhD student, it might be true to someone that's trying to get runs on the board to go for the big grants with the government. Beyond health expenditure, the Department of Health Disability and Aging has developed the National Action Plan for Endometriosis. The plan was launched in 2018 with the dual goal of improving the quality of life for those living with endometriosis and reducing the impact and burden of this chronic condition across the Australian population. The plan calls for improvements to the collection, youth and linkage of data on endometriosis to achieve this goal, which is where the institute is playing a key role Richard. Yes it is a comprehensive, accurate and timely data are critical for effective population health monitoring of endometriosis. Across the institute we are also working to improve data on the sexual and reproductive health landscape more broadly and we'll continue to deliver this data to support evidence-based policy and research. Richard, Melissa, Donna, this has been a really insightful and timely conversation and highlights the important role of endometriosis awareness month, enduring attention to a health issue that clearly is impacting many thousands of Australian women. Thank you for sharing your time with us today. Thank you. Thanks for tuning in to this month's episode of Behind the Dada. For more information about the AHW and access to the latest health and welfare data visit our website by the link in the show notes.