Transcript

Rachel Skinner [00:00:07] Good afternoon, everybody. Thanks for joining the WH&Y Wellbeing, Health and Youth NHMRC Centre for Research Excellent Excellence in Adolescent Health seminar series. I'm Rachel Skinner and I'm the deputy director of Wellbeing, Health and Youth, and I'm very pleased to be back here again chairing this session. We've got a really exciting session for you today. 

Rachel Skinner [00:00:36] So first off, we'd like to acknowledge the funding support of the NHMRC and the contributions of all of our research partners in universities across Australia. And we've got them listed there. We also acknowledge the traditional owners of Country, throughout Australia, and recognise their continuing connection to land waters and cultures. And we pay our respects to elders past, present and emerging. 

Rachel Skinner [00:01:06] So just again, drawing people's attention to the Wellbeing, Health and Youth community of practice, which is a place where researchers, clinicians, policymakers and young people come together to share ideas and exchange information and you can access that on why.org.au. Please go there to see if there's any new information that you can find that's of interest to you. 

Rachel Skinner [00:01:33] And just to orient everybody during your webinar, your microphone will be muted and your video switched off. So you can definitely ask questions throughout. And if you have anything to say, just go to the chat panel and you can type in your question there and questions will be asked at the end of the webinar. So type your comments into that sort of bottom right panel and post them and then they'll be picked up later. 

Rachel Skinner [00:02:09] It's my great pleasure to introduce Associate Professor Sarah Maguire, who's a clinical psychologist, researcher, educator and policymaker with 20 years of experience in eating disorders. She's the director of InsideOut, the national institute for eating disorders and leads a large research team with a broad research agenda. We're going to hear about a lot of that today. So that's that's really exciting. So I'd like to welcome now, Sarah. Thank you. 

A/Professor Sarah Maguire [00:02:36] Thanks so much, Rachel. Hi, everybody. My name's Sarah, as you've heard, and I'm the director at InsideOut Institute for Eating Disorders, which is located in the University of Sydney. Today I'm going to be talking to you about a few of our projects that we've currently got underway, our research projects addressing eating disorders in adolescence. 

A/Professor Sarah Maguire [00:02:57] I'd like to acknowledge the traditional owners of the land on which I work, the Gadigal people of the great Eora Nation. InsideOut Institute is housed in the Charles Perkins Building at the University of Sydney. We're privileged to work in a building that's named after a man that fought for what he battled for difficult outcomes often and prevailed. And I pay my respect to elders past, present and emerging. 

A/Professor Sarah Maguire [00:03:24] Just a little bit of an overview of the four key pillars of work that Inside-Out undertake. We undertake research and its translation, which crosses over directly, I suppose, into clinical innovation. Often we're actually dealing with research translation and you will hear about some of those more translation-focussed research projects today. We have a lot of workforce development activity that we undertake, which, again, is strongly linked to our, sort of, public policy service development work. So we have reasonably large contracts with both the state and federal government to try to innovate and translate into health pathways, to develop them where they don't exist, pathways for people with eating disorders and to try to drive evidence into practice. 

A/Professor Sarah Maguire [00:04:14] So briefly, I'll be talking today bit of a tiny overview of eating disorders in adolescents, not much. I wanted to focus on the research, given what WH&Y focuses on. We'll be talking about four of our current research projects: novel delivery modes for family based treatment for anorexia nervosa; our CAFTAN study, which is a Cannabidiol adjunct study; our Child and Adolescent Systems Pathway Study, which is looking at the health system and trying to analyse how it's being used to treat eating disorders; our InsideOut screener to identify at risk and likely threshold eating disorders in young people; and finally, our national project with Headspace National and a whole lot of centres across the country to try to translate the first ever evidence based eating disorder pathway into Headspace centres. 

A/Professor Sarah Maguire [00:05:09] So eating disorders are dangerous illnesses, as you probably know. They have approximately a 5% prevalence rate in the general population, if you include all diagnostic categories. Early treatment has much higher recovery rates. It's really important to remember that unlike some of the major mental illnesses, eating disorders are curable. Evidence based interventions increase remission rates up to 80%. There's a lot of variation in there, 50& to 80& is probably the rather large window that gets quoted often. 

A/Professor Sarah Maguire [00:05:40] Studies of patient experience identify compassionate, caring, non-judgmental health professionals who take the time to engage the person is been very important. It's really important to note if you're a clinician in the system and/or a researcher, because we probably should be researching mortality, shouldn't we, that eating disorders have high mortality rates. Death due to medical complications is the most common cause of death, but suicide is the next and it's a very large contributor to death. 

A/Professor Sarah Maguire [00:06:07]  I think that's an important point about eating disorders. They are classified under the mental disorders, but they are both, medical and mental disorders co-occurring. Some people refer them to them as neuro-biological illnesses. 

A/Professor Sarah Maguire [00:06:21] What groups are at highest risks? Well, very appropriately for this series, adolescence is the peak age of onset, actually, but that broader risk period is 12 to 29. For the peak, peak for anorexia nervosa, at least it's 14 to 16. It's a little bit older for the other eating disorders. Bulimia nervosa and binge eating disorder, it sort of goes up in age. 

A/Professor Sarah Maguire [00:06:48] Females are the most vulnerable for anorexia nervosa and for bulimia nervosa. But for binge eating disorder, it's actually much closer to a 50/50 split. Young people with obesity are at higher risk. People with a family history or a first degree relative are at higher risk. Women with polycystic ovary syndrome and diabetes, athletes or any other professional grouping where the thinner ideal dominates, so jockeys, models, etc. People seeking help for weight loss and dieters in general, which, of course, is really important when we're thinking about treatment of illnesses that require a diet. 

A/Professor Sarah Maguire [00:07:31] What are the long term effects of disordered eating, because sometimes we think it's fairly innocuous. We know that disordered eating has very high prevalence rates in our young people. It's almost the norm, we like to say, not the exception. It's part of a developmental trajectory, I suppose, for many to play around with their food, diet. We have a very fertile culture for the growth of body image dissatisfaction and behaviours that young people can undertake to try to ameliorate that. 

A/Professor Sarah Maguire [00:08:04] But we know that disordered eating alone leads to poorer health outcomes in adolescence and well into adulthood. And there are a number of studies, including the ones that I've listed here. Neumark-Szteainer has done a lot of work in this place. Adolescents with disordered eating behaviours as well as those with eating disorders have substantially elevated risk for a range of health problems in adulthood, including full criteria eating disorders. But they are also, if they dieted in adolescents, at higher risk of being overweight or obese, and a whole range of mental and physical illnesses, including anxiety and suicide attempts. 

A/Professor Sarah Maguire [00:08:38] The voice of lived experience, which is always good to ground what we're talking about: “Had I known as a 13 year old that this was an illness and not something I was choosing to do. Had I been referred to someone who could teach me the skills to express my emotions in healthier ways, I might not have become so disabled by an eating disorder into my twenties and thirties." 

A/Professor Sarah Maguire [00:08:57] The research studies I'm going to focus on today are five that we're in the process of undertaking at InsideOut. Some of them are drawing to a conclusion, so you'll get to see that sort of full spectrum of research from ones that we're sort of just beginning right through to completion. 

A/Professor Sarah Maguire [00:09:12] This study focuses on how are we going to get the evidence based treatment to young people with anorexia nervosa, particularly focusing on those with geographical barriers. The single most effective evidence-based treatment for anorexia nervosa in young people at the moment is something that's called 'family based treatment'. Specifically, it's often called 'Maudsley Family Based Treatment' because it was developed in its first iteration at the Maudsley Hospital in London. It's the most efficacious for young people with anorexia nervosa. And by 'young' it depends which study you're looking at, but up to 20 years of age, 20/21 in America. Obviously the legal voting and drinking age is different in America, so there's some argument that perhaps it's a little less effective with our 18 to 21 year olds in an Australian context when they reach full adulthood, in a sense at 18. 

A/Professor Sarah Maguire [00:10:08] It's typically delivered face to face with the whole family in the room. Outcomes are best when it's delivered within three years of onset. But access to FBT has been challenged by system, cultural, attitudinal and geographical factors, and rural and regional families are particularly in need and susceptible to these sort of access challenges, if you like. So we, with Daniel La Grange from the University of California, San Francisco, who wrote the manual that you see on this page here for Maudsley Family Based Treatment, we've been conducting a telehealth translation study to see if we could safely deliver Maudsley FBT to young people in rural and regional communities over telehealth into their homes. 

A/Professor Sarah Maguire [00:10:52] COVID 19 came along, and obviously it upsets a whole lot of your research projects. It probably helped this one, because at the time we were devising and starting the trial that adoption of telehealth hadn't really reached saturation and certainly that was accelerated. And we conducted an implementation study exploring the effectiveness, acceptability and feasibility of this type of therapy in this particular mode into the home of rural families with a child with anorexia nervosa. 

A/Professor Sarah Maguire [00:11:23] This is the map of New South Wales. These are the districts in which people were referred for treatment and received telehealth treatment. It was a four year pre-post implementation study. Alongside it was a whole lot of workforce development work: training clinicians, supervising them, upskilling them, ongoing supervision with Daniel La Grange, our international expert and author of the manual. 

A/Professor Sarah Maguire [00:11:49] And then, of course, there was the delivery and implementation of the therapy. We delivered it in five rural and regional health districts, and they're the ones that have the square kilometres underneath them: Murrumbidgee, southern, western, northern and mid-north coast. And we also delivered a centralised access directly through InsideOut for any families that were having trouble accessing it through their district. We wanted, wherever possible, to translate this therapy into existing health pathways, hence why we worked through the districts. But we also wanted to acknowledge that there were barriers beyond that and to provide a direct route through. 

A/Professor Sarah Maguire [00:12:31] 30 families entered. 90%, females with anorexia nervosa, 73% had anorexia nervosa, full syndrome and 27% atypical. And these are the preliminary results. In this graph you will say per cent BMI change for our young people. And this in this graph, pink is 'baseline', green is 'end of treatment' and yellow is 'six months follow-up'. We're still completing the follow-up, so you don't see complete follow up data here. But as you can see, per cent BMI changes in both conditions, but most markedly in the anorexia nervosa condition, which you would expect because atypical anorexia nervosa is often when the person doesn't meet the weight criteria. So they just don't need the same level of weight restoration, which of course is what BMI measures. It measures that weight relative to height. So showing that people are really improving from 'baseline' to 'end of treatment' and 'follow-up'. 

A/Professor Sarah Maguire [00:13:26] And what these actually show you is that people on average started about 85% body weight, which is the cut-off criteria for anorexia nervosa, and they're returning to above 90% at follow-up. This graph over here shows global AIDS symptoms, but it's laid out differently. So in this one, the parent scores are pink at 'baseline' and 'end of treatment', and the young person scores at 'baseline' and 'end of treatment'. And as you can see, for the parents, the scores are going considerably down for how they rate their young persons, their child's eating disorder symptoms, and the young person's ratings of their own eating disorder symptoms are decreasing significantly. All of these changes are significant, although we haven't put them into the model just yet. You'll also notice that young people self-report their eating disorder symptoms as much more severe than parents do, which is an interesting finding. 

A/Professor Sarah Maguire [00:14:28] What about the experience? Look, I'm only just doing a very whistle stop tour of all of the findings. We've got some pretty deep implementation data and publications coming up on this work. But certainly families found it as acceptable. A lot of them found it easier to have it coming into their home. There was a lot of concern about managing the medical risk of anorexia nervosa, delivering it into the home. We worked with GP's, we worked through the local health services to make sure that everyone was medically monitored and keep them safe in the home and that sort of worry dissipated over time. People liked the flexibility of being able to continue with their life to a certain extent and attend the therapy sessions. And above all else, "With such a lack of services in our area, this program has been the one thing that we could access to help our daughter with her eating disorder." We have very high, full remission rates from this study. 

A/Professor Sarah Maguire [00:15:22] So it really is a proof of concept that we can deliver pretty complicated specialist treatments that are always routinely delivered in ivory towers or in specialist settings for most of the time into people's homes and keep young people safe and bring about recovery from anorexia nervosa that we know if people don't get treatment for, will in most cases become a very long standing illness and it has too high a mortality rate. 

A/Professor Sarah Maguire [00:15:50] And these are all those satisfaction ratings. On average from the families about confidence in the clinician and treatment, the suitability of the model, the collaborativeness of the model, the adequate support from the clinician and overall satisfaction. So to a large extent, all of those. 

A/Professor Sarah Maguire [00:16:08] Okay, now I'm going to tell you about a study that we're just really beginning. We've only had one case enter the study so far, and that is using cannabidiol as an adjunct for the treatment of anorexia nervosa in young people. And we're using the same therapy, FBT. It's an open label pilot trial with with the possible extension for those that choose to undergo the extension. It's in collaboration with the Lambert Initiative for Cannabinoid Therapeutics, which is located here at the University of Sydney as well. 

A/Professor Sarah Maguire [00:16:42] The inspiration, I guess, if you like, for this was a study that was conducted at Origin Youth Health Service, which applied a similar dose of cannabidiol for treatment resistant anxiety disorders in young people. So these were young people that had had exposure to other sorts of treatments for anxiety and hadn't responded. And they were given this dose of cannabidiol, and they had dramatic change in their anxiety scores from pre to post. Unfortunately, that decrease in anxiety was not maintained once they stopped taking the substance, but it was a very significant and marked reduction while they were taking the substance. 

A/Professor Sarah Maguire [00:17:22] The other thing that is important to know is that cannabidiol is non-intoxicating and it's non-euphoric. It doesn't have the THC component and there's a lot of emerging evidence about its effects on anxiety. 

[00:17:36] Medical cannabis, the cannabis plant contains more than 100 cannabinoids. The THC is the one that we often hear about. That's the one that gives you the high, so to speak. And then cannabidiol, this one that we're talking about today that has these anxiolytic properties. It's widely prescribed and accepted in the Australian community for a variety of human disease states. Now, I think, about 30 at present count, and anxiety is the second most common indication for use of cannabidiol. And there's just a publication on it. 

A/Professor Sarah Maguire [00:18:12] So the rationale for CBD as an adjunct to Maudsley Family Based Treatment for young people with anorexia nervosa. The first stage of Maudsley Family Based Treatment is establishing that healthy eating pattern, nutritionally rehabilitating the young person. And, when it is frank, anorexia nervosa that meets criteria, restoring weight. When it's atypical anorexia nervosa where the weight might not be as reduced, we would still be talking about the relationship with food and re-establishing a healthy eating pattern, but affecting as large weight gain may not be necessary, but it's still very similar principles. 

A/Professor Sarah Maguire [00:18:55] This is a highly anxiety provoking period of treatment for the young person and for the family. There are lots of websites about Maudsley Family Based Treatment for eating disorders from a family perspective. You only need to look on there for one second and you will see the type of feedback that families give about this treatment. It's very, very stressful and it's stressful for the young person as well. 

A/Professor Sarah Maguire [00:19:17] Then in phase two, the management of the eating is transitioned back to the young person. It is a temporary intervention to save the life of the child and to restore healthy eating, to get the medicine, food is the medicine, to the child before we transition their independence and their feeding back to themselves. So that's stage two. And then stage three is dealing with the young person's developmental and psychological issues that remain after starvation, and the eating disorder have been treated to some extent. 

A/Professor Sarah Maguire [00:19:48] So the rationale really for CBD is 'can we reduce anxiety for that highly anxiety-provoking phase-one stage of Maudsley Family Based treatment, and, by doing that, can we have an impact on its effectiveness on weight gain, on recovery rates'? 

[00:20:11] Key eligibility. The young person needs to be 12 to 18 years of age with anorexia nervosa. They need to be medically stable. They need a GP referral into the study. They need to be nearing or at the very start of Maudsley Family Based treatment. So the exclusion criteria are just the opposite, really, medical instability. In this, sort of, proof of concept trial, we're not going to take people with a BMI less than 14 into the study or the equivalentm, they're off the growth charts. They can't currently be in hospital and they can't have previously done Maudsley Family Based therapy because obviously we're trying to detect a signal for improving Maudsley Family Based therapy by reducing anxiety with cannabidiol. 

A/Professor Sarah Maguire [00:20:54] This just gives you an overview of what's going to happen with the dosing. As the young person enters the trial, they're going to be getting Maudsley Family Based therapy during this period. This comprises Phase One of Maudsley Family Based treatment, and then if they want to do an extension arm, continuing to take cannabidiol through the rest, they can, and we will analyse that group of people as well. And so this is where everyone will get the CBD and then this is the extension arm and then these are the measurement points for questionnaires and urine. And we have a three month follow up built in. 

A/Professor Sarah Maguire [00:21:28] How do I get involved? We're taking referrals right now. This is a QR code. This is Sarah-Catherine Rodan who is the trial coordinator. This is a study email and her phone number. 

A/Professor Sarah Maguire [00:21:40] And then just to give you a bit of an insight into what the MFBT therapists requirements will be. So our MFBT therapists are going to be in the community, potentially referring their patients into the study, hopefully referring some of the patients into the study, and they will be involved in the consent process. They will have some fidelity monitoring measures throughout the trial and they will have an exit survey as well. We want to understand if they think that this had an impact for their patients as well, and if they view it as feasible and acceptable form of adjunct to be delivering alongside psychological intervention. 

A/Professor Sarah Maguire [00:22:23] We need GP's as well to be involved in the treatment team. This is the routine community based treatment team. For a person with anorexia nervosa, you will at least have a medical professional and usually a psychological professional, often dietetic. You might have a paediatrician, if you're lucky, as well. But these two, a medical and a psychological, are absolutely paramount for this study. And the GP too will be involved in enrolment and consenting and monitoring throughout to three month follow-up. 

A/Professor Sarah Maguire [00:22:54] CBD has a favourable safety and tolerability profile up to 6000 milligrams single dose and 1500 repeated dosing. It's been extensively studied in paediatric epilepsy. At high doses it has nil abuse potential or dependence. It does, however, have some side effects and we have to monitor for those, including those ones listed there. And less common side effects are elevated liver function tests. But obviously we're keeping our eye on that because we're dealing with anorexia nervosa that already can have deranged liver function tests. 

A/Professor Sarah Maguire [00:23:30] The next study that I'm going to give you a quick overview of is our Child and Adolescent Pathway Study. As I, sort of, introduced at the beginning, InsideOut is concerned not just with innovating with new treatments and adjuncts and translating innovation into practice, but also very much we concern ourselves with the health system, how it operates for people with eating disorders, how it isn't working and how it is working. This 'Child and Adolescent Pathway Study' we began quite a few years ago covered really got in the way of this one because it's a data linkage study and it is part of a much larger data linkage program that we are doing called 'The Mainstream Program'. I won't talk to you about that today because it doesn't focus in particular on child and adolescent populations, whereas this substudy that was actually funded through a different funding source does. So I'll give you a bit of an overview of that and many of the same sorts of questions that we're looking at here, we're able to look at it on a much larger scale in our mainstream study, which is linking all health administrative datasets as well as births, deaths, marriages, prescription, GP, health, Headspace datasets, linking them across Queensland, New South Wales and Victoria. We would have loved to have done it for the whole nation, but the funding envelope didn't allow for that. But we've got three of the most populous states and we've got every person that was diagnosed with an eating disorder over a 20 year period. So that's mainstream. This is a much smaller study. 

A/Professor Sarah Maguire [00:25:06] And, really, the question we wanted to ask when we embarked on this study is: the evidence-based clinical pathway for children and adolescents who present to an emergency department or hospital setting, if you like, with anorexia nervosa, they're usually pretty unwell by the time they get to the emergency department or the hospital. And so the evidence would suggest that they really need a brief hospitalisation, as brief as you can make it, so that they can be returned to the least restrictive care option as early as possible. They can be returned as much as they can to their developmental trajectory, to their community, to their family, to their friends. But of course the anorexia nervosa won't resolve with a brief hospitalisation for most people, certainly not when they get to this level of severity. So they need to be followed up by comprehensive community care. And the evidence based treatment, as I've said, is Maudsley Family Based treatment. 

A/Professor Sarah Maguire [00:25:59] One of the things that InsideOut has been funded to do is to lead the New South Wales Service Plan for eating disorders. And so our job is to train the workforce and to try to get them delivering interventions much closer to the evidence. The last round of the Service Plan was 2020 to 2025. The first round of the service plan was the five years before that. We've sort of just begun this 'large scale training of the workforce' as we entered into this study in 2017 to 2019, and we knew that we were going to be seeing some change over that period. 

A/Professor Sarah Maguire [00:26:35] We wanted to understand the degree of clinical variation in the treatment delivered to children, the reasons for it. To do that we linked individual patient level data from hospital and community services within New South Wales for years 2017, 2018 and 2019. That allows us to track the patients pathway through the health system over those three years. 

A/Professor Sarah Maguire [00:27:00] What did we find? We found that 544 people with anorexia nervosa who were children and adolescents were identified within that dataset over those three years, and these were their journeys. If they came in through the emergency department and then had a hospital admission and then went to CAMHS. These are the total numbers and these are the numbers that ended up in CAMHS. This is the total number of children and adolescents with anorexia nervosa that didn't have an emergency department encounter but had a hospital admission followed by CAMHS. And this is the total number that had an emergency department direct to CAMHS. And CAHMS, for those of you that don't know, is Child and Adolescent Mental Health Service. So that's our community-based public health service that delivers treatment to people with mental illness that are children and adolescents in our public health system. Hopefully, we all know that the emergency department is the emergency department of the hospital. And by a hospital admission, we're talking about any hospital admission in any ward that could be picked up by the data set. 

A/Professor Sarah Maguire [00:28:10] And then we wanted to ask, what are people getting in CAMHS? Are they getting an evidence based treatment? And we were actually reasonably pleasantly surprised by what we found. We thought that at this point in the journey, prior to the really large scale workforce development that we began in New South Wales about 2019, 2020, and it's been ongoing, that we could reasonably expect to see that very few young people were getting an evidence based treatment for anorexia nervosa. Of those that were treated for anorexia nervosa in those child and adolescent community health settings, 498. These are the numbers that had no prior hospitalisation and had a prior, and this is the breakdown of whether or not they were offered the evidence based treatment. So as you can say, quite a number were offered. There's lots of room for improvement, but quite a number were and rather reassuringly quite a high proportion of those accessed the evidence based treatment. 

A/Professor Sarah Maguire [00:29:11] And then we looked at fidelity to the model because obviously from health administrative datasets it can look like people got the evidence based treatment, but whether they actually got the components of that treatment. So we did a file audit for that. We matched those records to the files in their relevant districts and hospitals, and we did a file audit on each and every one of them to look for fidelity to the model. Total fidelity n=150, partial fidelity n= 84 and 17 unknown. 

A/Professor Sarah Maguire [00:29:45] And these are the types of measures of fidelity that we included for Maudsley Family Based therapy. The therapy involves weighing the young person at each session. So, was that done by the clinician? And as you can see, a very high percentage on that. Discussion of food as part of a therapeutic encounter, we can see a very high percentage on that. Inclusion of the family in the sessions, a very high percentage on that. And then the lowest compliance rate was around the inclusion of the family meal. Session two of Maudsley Family Based therapy, you get the parents to bring a meal into the room and the therapist supports the parents to feed the child, with anorexia nervosa alive in the room, usually fighting those attempts. The therapist helps to train the parents and support them to do that very difficult task that they are going to be sent home for, for the next 12 weeks to do three meals and two to three snacks a day re-feeding their child. And that's that very anxiety provoking part of it that I discussed. 

A/Professor Sarah Maguire [00:30:52] And so not surprisingly, this is a pretty challenging session. So we can see that our clinicians are avoiding it, sometimes probably. Or potentially our families are refusing to do it. But what we know about practice is that usually it's the clinician that thinks perhaps it's not necessary and doesn't include it. It's also, to be fair, the part of therapy that is least like another type of thing that you would do in a psychotherapeutic approach. So, I think it's understandable, but probably that's the most important skill that the parents need to get in terms of the the 12 week job that they've got to do. 

A/Professor Sarah Maguire [00:31:34] The next thing I'm going to talk to you a little bit about is our InsideOut Institute Screener. And we've been developing this over the last few years. It's a co-designed screener for eating disorders. Why did we develop it? Well, basically, we were launching our website and we wanted to put a screener on our website. One of the most important things for eating disorders is early identification, and we know that a lot of that identification is self-initiated. So we wanted a screener on our website and so we did a review of the literature and looked at all of the screeners is available and a lot of the language was extremely confronting and probably not appropriate for that, you know, for a website where a person might be coming to get general information, they might just be beginning their journey, they might be flirting with the idea of recovery, as one of the psychiatrists I work with phrases it. And we wanted to screener that used appropriate language, that was a little bit more gentle, that was about starting a conversation. 

A/Professor Sarah Maguire [00:32:34] So it was originally validated as an online screener. But I want to talk to you about that validation and then also talk you through some more recent validations that we've done in young people, in Headspace settings and in general practice, because obviously we want that screening and identification to translate into primary health where we know there is another great opportunity to identify people with eating disorders early. 

A/Professor Sarah Maguire [00:33:02] So these are the questions in the screener. And the first one, as you can see, is how is your relationship with food? And then it goes from there. And we have had quite a lot of people since we first published this screener come to us and ask us if we can if they can use it on their website because of these properties, including NETA in the United States, one of the biggest eating disorder advocacy organisations, the Butterfly Foundation in Australia are the process of of transferring to this to be the one that they use. We think it's got the tick of approval from lived experience and as you're about to see, it's got some really nice psychometric properties. 

A/Professor Sarah Maguire [00:33:40] So this very busy numbers slide is just to tell you about the initial validation study. In 1346 people aged 14 to 74 and we've got some really strong validity and reliability coefficients of the measure. It's a really robust sort of measure in terms of psychometrics. It outperforms the other gold standard eating disorders screeners, in particular the EDEQ Short Form, which is the one that tends to be most broadly used. 

A/Professor Sarah Maguire [00:34:12] We also wanted a screener that didn't just identify probable case, that you could identify people at risk. And as you can see from this particular analysis, we are able to identify moderate risk, high risk and a probable case of an eating disorder from the screener. And when you go on to our website now and use the screener those cut-offs are programmed in and the person gets individualised feedback based on where they fall on that risk continuum. 

A/Professor Sarah Maguire [00:34:43] And then as I mentioned, we have recently validated it in Headspace and primary care, meaning GP settings. We wanted to make sure that it was valid not only for online use but a lot of our GPs and Headspace clinicians said 'look, we really want to be able to deliver it face to face, so would you now be able to do a validation of that?' So we have compared at face to face versus online delivery. 52% of this is Headspace and the other are primary care. We recruited in the Northern Territory and New South Wales. We, actually, in this sample had 24.1% male, which was good, and we had really nice psychometric properties demonstrating the ability of the screener to be delivered face to face to young people in those settings. 

A/Professor Sarah Maguire [00:35:31] And then the journey goes on with that one. This one is particularly relevant to young people, but we now have perinatal services asking if we can test it and adapt it in there for pregnant women. We've got obesity services adapting it in there. It's hopefully going to be one of those tools that we can just test the validity of it in a number of environments where we know people are presenting who would benefit from identification. 

A/Professor Sarah Maguire [00:35:59] And then last but not least, our Headspace Translation study. This is a really big one. We are partway through. It's very, very exciting. We have been developing over the last five, seven, eight years, brief e-therapy programs for eating disorders that have been going through pilot and randomised controlled trial. Actually, our largest randomised controlled trial was just published yesterday in Psychiatry Research for our e-therapy program for bulimia nervosa, and we piloted that in a Headspace clinic, a community mental health setting and a specialist service. We had a number of pilot studies published before that. We applied for a grant to translate those digital therapy pathways into Headspace centres across the country. 

A/Professor Sarah Maguire [00:36:50] This is a collaboration between InsideOut Institute and Headspace National. We've received funding for the next two years to deliver this and we are basically establishing eating disorder early identification and digital intervention pathways with a staged training program for centre staff so that we are upskilling those staff as we bring in the bespoke pathway. 

A/Professor Sarah Maguire [00:37:14] So it's got a dual goal, really. It's to develop the first eating disorder specific pathway through Headspace centres for young people, but to really upskill the workforce as we go into those settings, so that they understand eating disorders and can support that pathway. 

A/Professor Sarah Maguire [00:37:33] So, between April 2022 and current day. 95 Headspace centres of about 150-something across the country have registered to be involved to participate in the upskilling and start to embed both the screener and the digital therapies that they will deliver in a guided self-help format into their centres. We've had 126 referrals of young kids to the brief program. 84 clients have received their treatment or are partway through it. Ten centres have signed up for phase two training to become quite extended in their skill base and 44 clinicians in training in the Headspace centres to start to deliver the guided self-help. In the first phase of the treatment our InsideOut clinicians delivered the guided support through the digital program to the young person. And then gradually over time we are upskilling the Headspace clinicians so that they will be able to take over that and deliver the clinical service directly from in their centres. 

A/Professor Sarah Maguire [00:38:32] Just a little bit of an outline of the first one that we're integrating into these pathways. It's brief binge eating e-therapy. There's a four and a ten session module. It has an online training for the clinicians in there in how they can support the young person session-to-session through the treatment. And it's a cognitive behavioura-based therapy. These are just screenshots of the different types of tools. It has a lot of psychoeducation, it has an app which I'll show you on the next page that you can download to your phone, where the young person can monitor their food and their mood and engage in the behavioural experiments that they need to engage in as part of the CBT treatment. And then it populates as part of the program in a calendar of both what they're planning to eat, monitoring of what happened and of the behavioural and other experiments they set for themselves. There are goals and there's lived experience videos. There's also interactive activities to keep the user engaged with the online program. 

A/Professor Sarah Maguire [00:39:41] And this is the app, or a screenshot of the app. As I said, this is how it populates and these are all the things that it does food, logging, thought logging and thought challenging, behaviour logging, goal setting and tracking and planning your food. 

A/Professor Sarah Maguire [00:39:55] And as I said, we've published a number of trials in bulimia nervosa and binge eating disorder and our bulimia nervosa randomised control trial just published yesterday, as I said, and we've had a couple of pilots, only one of them is listed there in binge eating disorder and bulimia nervosa. And we've been able with both the four and ten session, to bring about clinically and statistically significant reductions in the core eating disorder behaviours and psychopathology post-treatment. These have been maintained at three months and in the RCT at six months. In fact, in the self-help condition, it continued to improve in the randomised controlled trial at six month follow-up. So a bit of evidence that if you get a more pure self-help version of that ten session digital therapy and you don't have the guide that you might be internalising those skills better and therefore after treatment ceases, you continue to improve right up to the six month follow-up point. And these are the sort of days that we got in terms of effect size reductions on the core measures. To find out more, please go to our website: insideoutinstitute.org.au. Thank you very much. And now I believe we'll take some questions. 

Rachel Skinner [00:41:24] Thanks so much, Sarah. That was an amazing overview. Like, quite incredible. The body of work that your institute  has taken on is really impressive. So I'm just going to look at some of the questions that have been asked throughout. The very first question is from Michelle, and it's in relation to your first study, I think. "What you're using individualised goal BMI, e.g. return of menses or pre illness BMI- centile, or the generic BMI?" 

A/Professor Sarah Maguire [00:42:01] We're using obviously the change that we're able to bring about as the primary measure. But no, we're not using individualised BMI goals in that sense, except that, of course, in atypical anorexia nervosa, as I said, you just wouldn't expect that same percent change in BMI. So we would still view that as a very good outcome. So in that sense, I suppose, but I think I know where this question's going and not we haven't implemented it in that way yet. 

Rachel Skinner [00:42:34] Okay. Thank you. Just coming down to the next question. And this is that the child and adolescent yet the community one. "How difficult or easy was it to set up the data?"

A/Professor Sarah Maguire [00:43:09] Oh, my God. Really difficult. Yeah. Data linkage is really hard. The main thing was that because we needed those three years of data, we basically submitted at the end of 2019, maybe even the beginning of 2020, and just walked right into the pandemic where there was pretty much, from what I can understand, a total prioritisation of data linkage needs to deal with the national crisis. So what would have ordinarily taken six months to a year max to get your data out took close to three years. So we only relatively recently received child and adolescent data. And for the much bigger data linkage that I mentioned, that's mainstream, that's across the three states even later. Yeah, so, really full on and you need real expertise. We have an epidemiologist and biostatistician who is totally expert in that. That's all they do. And those applications to link that data take a really long time and a great deal of expertise. And you know, the other thing about it is there's lots of missing data. It's not quite what it's cracked up to be. You've got to be very good at data cleaning. It's highly specialised and quite tricky. I don't mean to talk anyone out of it because I think it's pretty important to find out what's going on in our health system and there's very few ways to do that. But it is challenging. 

Rachel Skinner [00:44:39] Yeah, we've experienced some in Wellbeing, Health and Youth, our research program. We've also experienced a lot of difficulty with the data linkage. It just has taken so much longer than we expected and also through the pandemic, with lots of people not being able to respond to our request. It's very, very difficult. So, in fact, the whole grant, you know, gets finished before you you know, you get the data. 

A/Professor Sarah Maguire [00:45:02] Very, very reassuring, Rachel. So very worried about it. The bigger one where that's exactly what's happening. And we're trying to produce ridiculous levels of outcome in the last year. But as we know, I think NHMRC and all of the competitive grant bodies, they're very happy to give you that 1 to 2 year extension, particularly in the light of COVID. No more money, but you can have the extension to deliver those outcomes, which is nice. 

Rachel Skinner [00:45:28] Mm hmm. Great. This is, Mandy. "How a young people's lived experience is considered in the development of the iOS screener. And was there any content validity, cognitive?"

A/Professor Sarah Maguire [00:45:45] I'm casting my mind back to exactly the processes that we did in the in the co-development. That content validity cognitive interviewing doesn't ring a bell. I'm not entirely sure if we would call it something else, but it was co-designed with young people and so their experiences were very much part of it. It was a range of ages in that co-design process. 

Rachel Skinner [00:46:12] Yeah. So, you know, the cognitive interviewing is taking them through the questions and then them sort of speaking out loud how they understand to. 

A/Professor Sarah Maguire [00:46:19] The audience, yes, we've done that process. We haven't called it that. Yes, probably should. 

Rachel Skinner [00:46:31]  Okay, great. Um. And then we have Jennifer. "Thanks for that fast tour of the rather staggering amount of research work you've been undertaking, great talk. Sorry, if you told us, but I missed it. How well does the telehealth FBT address mental health conditions co-morbid with eating disorders?" 

A/Professor Sarah Maguire [00:46:54] Yes, good question. Phase three of Maudsley FBT is is left rather open. Some people would call it almost a blank manual. And it's meant to be the place where you engage in psychotherapeutic resolution of all of the remaining issues, including anxiety and depression. We had a pretty outstanding clinical psychologist working as the therapy deliverer on that one. She had more experience than usual because she was coming back after being [inaudible] site for quite some time to do her PhD, which was of which this was the subject. And also we had Daniel La Grange supervising her as well as myself. And I'm a clinical psychologist and very big on treating co-morbidities as part of your recovery journey. So, look, I think it's probably fair to say that a reasonable amount of attention was paid to those sorts of concerns where they presented. What you will find in anorexia nervosa, of course, is that most people, when they are in a starvation state, are depressed. Anxiety is absolutely part of the features of anorexia nervosa. Some people describe it as an anxiety disorder and believe that it would fit better in the diagnostic system of the anxiety disorders. So by treating the anorexia itself, you often see a significant lift in depression and anxiety. And then if it doesn't lift, then phase three would certainly be when you do that. 

A/Professor Sarah Maguire [00:48:37] Was. Yeah, I dealt with that one pretty inadequately, just try to gloss over a whole lot. The first four sessions of the ten session version of BEeT have been tested standalone, mainly because the first time we consulted with Headspace many, many moons ago, they said we would actually really like a four session version. And also because the first study we did, we had an honours student working on it, as is often the case with these busy research units that look like they're enormously well funded and are often, you know, very much relying on the HDR students and post grads for work. So we had an honour student and four with what we could fit in the time frame. So for those two reasons, and then when we got the trials funded, we were able to test the whole ten session. So and then to answer the second part of your question, no, the four is not the self-help. We have tested the four and the ten in a self-help, pure self-help mode where you don't have a clinician guiding you and a guided self-help mode where you do have a half hour session a week alongside the digital one hour session, aroundabout, where the clinician guides you through the program. 

Rachel Skinner [00:49:59] Great. Thank you. I'm just going to go back up to Cath. "Is the app generally available?"

A/Professor Sarah Maguire [00:50:04] It's about to be, very excitingly. You know, once we sort of had run all of these trials and demonstrated these digital therapies effective, we were able to secure two grants. One, which I mentioned, which is embedding it in Headspace and health pathways nationally and then another one, which we've just secured, which is to open to the public. So we're setting up the open to the public e-clinic at the moment, and we expect to open it early next year. So, yes, the platform that delivers the e-therapies will be open next year and the app that is embedded in the e-therapies that you can download to your phone will obviously be there too. 

Rachel Skinner [00:50:47] Great. 

A/Professor Sarah Maguire [00:50:47] It is a bit amazing. We feel very lucky to go straight from a randomised controlled trial being published yesterday into national implementation. Yep. 

Rachel Skinner [00:50:56] Yeah. It's just excellent work. An excellent implementation site. We should tell us about that later.

A/Professor Sarah Maguire [00:51:05] And definitely there are secondary outcomes. It's very, very hard to get published in the journals that you will want to get published in for eating disorders if you don't make weight your primary criteria. In one of our studies where we really didn't want to make weight the primary criteria, we didn't and we have just been rejected from the third journal. And it's a really important paper about peer mentoring in eating disorders. And it was very lived experience, co-design and it was and it was led by one of our collaborators, not internally. So we were the primary partner in that. And they felt very strongly that weight and BMI was not to be the primary outcome and we just can't publish it where it needs to be published. So. 

Rachel Skinner [00:51:52] Was that the critique of the reviewers? 

A/Professor Sarah Maguire [00:51:52]  That was the reason why we were not published. If you aren't going to have a per cent change in weight for an illness like anorexia nervosa as your primary outcome, we will not publish you. So what we do obviously is we have primary analyses of the outcome that is going to get your work to the audience it needs to be in, so that it has impacts and it changes the way people are treated, and we have secondary outcomes and then we have a discourse on that. 

Rachel Skinner [00:52:25] And what is the concern in the community about that?

A/Professor Sarah Maguire [00:52:31] So weight stigma, weight being the only important measure, eating disorders being misconstrued as illnesses that are only experienced by people that have had great, you know, significant weight reductions. That's not true. The vast amount of eating disorders are in normal weight, people or people who might fall into the overweight range. I could go on. I could go on, obviously. When you're treating someone with any concern, whether it be an eating disorder or anything else, you want to treat the whole person and you want the whole person to thrive. The number on the scale needs to be a very secondary consideration and in many cases will be irrelevant. And so the absolute focus on it is invalidating and misleading at times. 

Rachel Skinner [00:53:25] Well, yeah, it could potentially impact on their willingness to participate and a range of other things. Now, from Bec. "The app outlook's fabulous. Will this only be used for young public once it will be open to the public?"

A/Professor Sarah Maguire [00:53:39] Open to the public soon. Valid for adults too. And yes, they could have their school counsellor as the guide, I believe. Look, there is some caution around how we're rolling this out nationally. And so there is a preference from those that funded and those that govern it. As with anything that you roll out, you got to have a lot of clinical governance that we roll out pure self-help first and then guided self-help. So it might be a little while before school counsellors could guide their person through that, but they could certainly refer the person to it and talk to them about it. Yep. 

Rachel Skinner [00:54:18] Okay. Rebecca. "In your FBT telehealth, it seems that you've targeted LHD that have more regional and remote areas. Was digital health equity something that was considered? And was there any equipment provided?" 

A/Professor Sarah Maguire [00:54:35] That's right. We bought them laptops where we needed to. We had dongles delivered to the house and whatever else they needed. We did not want those sorts of barriers to get in the way and they are real barriers. We bought scales for the local GP office, if they needed it, or for the local clinic, if they needed it. This was funded by a philanthropy grant. We're so grateful to that family. And yes, we focussed on regional and remote areas because the whole purpose of the trial was to try to address some of the inequity issues around access to treatment for people that lived in more remote settings. Some of those families would be doing an eight or nine hour return drive to attend a session. 

Rachel Skinner [00:55:18] Hmm. Great. Thanks. And we've actually got to the end of these question. So I'm going to ask you a couple of my own. So you did mention that how important it is for early intervention to get in early. 

A/Professor Sarah Maguire [00:55:34] We don't have a hell of a lot of great ways to do that. But yes, it is important. Yeah. 

Rachel Skinner [00:55:39] Yeah, yeah. So the screener being widely available, that could be helpful, of course, in reaching a large population. And I'm particularly interested in sort of the general population and the prevalence of risk factors, I suppose, for eating disorders. So the prevalence of would that be disordered eating? I think it would probably be very common in the adolescent age group. And and what do we know about primary prevention approaches. So for example, in schools, I mean, educational approaches around healthy eating, etc., Do they make a difference to the prevelance of this illness? 

A/Professor Sarah Maguire [00:56:16] Well, evidence that the prevention programs that have been piloted make a good impact on body image dissatisfaction, which we know is one of the risk factors. There is less clear evidence whether they actually prevent actual cases of eating disorders down the track. Eric Stice does some really good summaries of these. And yeah, there certainly are studies where it has, you know, where the methodology has allowed for the examination of cases following and showing that it can have an impact, but they're pretty rare. The other thing that is probably one of the major problems with the prevention space is that a lot of the studies have been in university populations probably because of feasibility issues, but that is probably not prevention. I'm not entirely sure what we're preventing there, but we need to be getting in much younger. There are some school based programs and there are others that are being trialled and I suppose in a way a very crude summary might be that over time the target populations are getting younger, so we might have some better data coming out. But yeah, no, there needs to be a lot more investment in prevention and a lot more work in my opinion. Yeah. 

Rachel Skinner [00:57:40] And often you hear me and this is a common refrain around a whole lot of different areas that affect young people. It's, you know, social media has a role to play in promoting unhealthy eating that could, you know, body image disturbance that could be a risk factor for this. And, you know, I've even heard that it causes, you know, eating disorders in young in adolescent females. So I just wondering about your outlook on this. 

A/Professor Sarah Maguire [00:58:07] Whenever I get asked to talk on this one in the media, I pass. Scott Griffiths is doing some really interesting work on social media and eating disorders. I would direct you to his work. In terms of the prevention stuff, actually, we've actually got a good paper too. It's a rapid review of the whole prevention space just published in the last year. If you Google 'Rapid Review Eating Disorders Prevention', I will be the senior author on that. So Maguire will be in there. But in terms of social media, I direct you to Scott Griffiths work where in early stages. But yes, again, there seems to be some indications that the type of use of social media and potentially the amount are driving an increase in some of the risk factors that we would think about for eating disorders, including body image concern and dissatisfaction. I think we're a little away from causation, but we certainly have an epidemic, if you like, of young people that are really unhappy about their body. It's coming up every year at the top of the mental health surveys for our kids and young people. We are almost positive that that is being driven, at least in part, by unhealthy messages that are bombarding them through multiple means. I like to think about it as it's a very fertile ground, isn't it? It's a very fertile environment that we have created for a poor relationship with food, a poor relationship with your body. And both of those things are key to the development of eating disorders and lots of other things. And we certainly can do a lot to help the overall health of our young people. 

Rachel Skinner [00:59:49] Yeah. Yeah. We can even use social media as a platform to disseminate the evidence based messaging. How we could counter it. 

A/Professor Sarah Maguire [00:59:57]  The counter offensive, that's right. And certainly there is some data that for some people they're getting their positive reinforcements about body from social media and that some people are using social media even as a positive support while they re-feeding.

Rachel Skinner [01:00:17] Well, thank you so much, Sarah. That was just really incredible. Really very impressive. And everyone was so interested and engaged and we have had a fabulous attendance and we've come to the end of time. So I just want to thank everyone for engaging and we'll be back again in a month. 

A/Professor Sarah Maguire [01:00:35] Thanks, Rachel. Thanks, everybody. Bye for now. 

Rachel Skinner [01:00:39] Bye bye.