WEBINAR: The Burden of Illness among Young People Attending Specialist Outpatients Services at the Mater Young Adult Health Centre
PRESENTER: Associate Professor Simon Denny​​​​​​​
DATE: 23 May 2023



Ian Williams [00:00:09] Welcome everyone to the May Wellbeing,Health &  Youth webinar. Looks like we've got quite a few people joining us today. My name's Dr Ian Williams, I'm a research fellow in adolescent health at the Department of General Practice and Primary Care at the University of Melbourne, where things are very cold today. I've got my nice jumper on to keep me warm. Our team is also part of the research group with the WH&Y team. Those who are joining us for the first time today, the Wellbeing Health & Youth  group is an NHMRC funded research excellence in adolescent health and we're grateful for the support of our major funder NHMRC and the collaborations we have with our partner institutions. 

Ian Williams [00:01:09] Before we begin, I'd like to acknowledge the traditional custodians of the country throughout Australia and recognise their continued connection to land waters and to culture. And we would all like to pay our respects to the elders, past, present and emerging. And those joining us might like to share the country that you're joining us from today. I'd like to invite everybody to take a look at our website. You can see the web address here. We've got a range of resources, including links to the past webinars that we've run. Just before we kick off today, a couple of housekeeping things. During the webinar, your microphones and camera will be switched off, but we welcome you to add any comments and questions you'd like to ask in Chat, and we'll get to those at the end of the session today. I can see a few people are already adding their comments to Chat. I'll stop chatting now. I'm delighted to introduce our presenter today, Associate Professor Simon Denny. Simon's an adolescents and young adult physician and the director of the Mater Young Adult Health Centre in Brisbane, where I understand things are slightly warmer than they are here in Melbourne. He's published extensively on youth health issues in New Zealand and internationally, and he brings a clinical and epidemiological focus on youth health issues, especially around risk taking behaviours, wellbeing and youth-appropriate health services. So without further ado, I'll hand over to Simon and we can all sit back and enjoy his presentation. Thanks. 

Simon Denny [00:03:15] Thanks Ian. Welcome everybody. It’s  lovely to be able to present from up here in Brisbane. I was reflecting on how the technology enables these sorts of events to take place these days, and I guess it's something that we perhaps learnt through covid how to do these online talks much better. But it's lovely to be linked in and be talking to a group of people who are interested in youth health, researchers, policy makers and also clinicians. 

Simon Denny [00:03:50] I'm going to be talking about some of the research that we've been doing up here at the Mater Young Adult Health Centre. I guess what I want to do is sort of highlight some of the issues we see that are facing young people living with chronic, complex health conditions. And leading into, I guess, what we understand about what that means for youth-appropriate care and talking about key principles about that. And then lastly, I’ll end with some characteristics of effective adolescent and young adult  health services, and then hopefully have a robust discussion following about some of these ideas. 

Simon Denny [00:04:27] I'll kick off with the Burden of Illness Study that we did up here at the Mater Young Adult Health Centre. So the Mater Young Adult Health Centre is quite a unique service in Australasia in terms of it's a youth orientated service in an adult hospital. I think Westmead's probably the only other site that's similar throughout Australia and New Zealand in terms of adult health services that have reached down to this population as opposed to adolescents and young adult health services come from pediatric backgrounds. 

Simon Denny [00:04:59] The Young Adult Healthy Centre has a range of subspecialty clinics. We have an inpatient ward and drug and alcohol service in an emotional health unit. And the data I'm talking about today comes from our outpatient service across the various subspecialties. We have about 10,000 young people attending these clinics each year, and the study is a snapshot of some of those young people attending those clinics. 

Simon Denny [00:05:25] The first slide just talks about the clinics that participated in this study called the Burden of Illness Study. We have diabetes, irritable bowel disease, our metabolic clinic, PKU, renal, which is mostly renal transplant in young people, respiratory mostly CF, rheumatology and craniomaxillofacial who participated in the study with a sample size of about 420. This was the age bands,  you can see our service goes from 16 through to 25 and most young people in that sort of 17 to 22 year old age bracket.  

Simon Denny [00:06:10] This is the ethnicity of the group. And you  can see probably Caucasian, but obviously a number from other ethnicities, including indigenous Australians. And on the right hand side, the living arrangements, as you can see, most young people were living at home, but a number were living independently or with partners or friends. 

Simon Denny [00:06:34] And this slide just shows the educational status, and I guess what we saw here was that there were a number of young people, both at high school, TAFE, university, but also in a variety of employment arrangements as well, often casual or part time type of employment, but also a number that were unemployed. 

Simon Denny [00:06:59] Now, this was, I guess, one of the slides that was interesting to us. We also asked about financial stress. And this slide was asking, do you have difficulty managing your health care costs? And we split this by clinic. And I guess somewhat surprisingly, rheumatology was one of the highest in terms of clinic, whereas the surgical patients had the lowest, and that might reflect some of the biologicals required for treatment in the rheumatology space. And then we also looked at financial stress or difficulty managing health care costs based on current income by their living arrangements. And those that were living alone or other had the highest rates of health care stress costs compared to those that were living with their parents. And I guess this was reflected also in this slide that by income band, the older age groups are reporting more difficulty managing health care costs versus the younger. And that may reflect that they were more often living independently from their family. But I guess that was somewhat surprising to us because we were expecting maybe that to level off somewhat, but there was no signs of it, it just had a linear increase. 

Simon Denny [00:08:16] And this is related to their depressive symptoms. So we looked at those that had moderate or severe depressive symptoms based on the K10, you can see that those that also reported difficulty managing living costs on their current income were significantly more likely to have moderate or severe depressive symptoms. 

Simon Denny [00:08:37] Now, as part of this Burden of Illness Study, there was a whole raft of measures that the investigators asked about. So we asked about well-being using the WHO 5, the K 10, which I've just  shown you, but also things like perceived stress. There were two Connor-Davidson resiliency questions. And there was quite an extensive social support questionnaire that asked for various dimensions in terms of family, friend or other. There is an internal locus of control questionnaire and also a pediatric quality of life. And then quite interestingly, too, a brief illness perception questionnaire. And this is taken from a much larger suite of questions in this brief and it takes eight of those questions from the eight domains that that larger questionnaire asks about. 

Simon Denny [00:09:28] And so one of the challenges we had analysing this data was quite simply, how do we make sense of all this data? And so this is, I guess, statistics seen as a data reduction problem. So we had eight scales with a number of subscales. We weren't able just to simply sum across or average these scales because they were quite different in their dimensions and what they asked about. And so when we think about this, there are two types of data reduction, these's what we call variable centred or patient centred data reduction, variable centred are things like factor analysis. But we opted for a patient centred approach which groups patients by the similarities and this is called a Latent Class analysis, and that's what we did for the study.  

Simon Denny [00:10:16] So for those not quite familiar with Latent Class, it is very conceptually similar to a Factor analysis where you've got a number of measures, here those measures are scale one, scale two and so forth, all pointing down to an underlying construct or a latent variable. And if that latent variable is continuous, we call it a factor analysis type of approach. But if we conceptualise that latent variable, that circle in the middle as categorical or having different categories, then this is a Latent Class analysis. And I want to talk you through that because it enables us to look at this data in quite a unique way. 

Simon Denny [00:10:55] So this is how the actual analyses are done. You postulate that there's two, three, four or even five classes of young people in that 420 sample and then you fit a model with either two classes, three classes or four of those latent categorical variables. And then look at the fit statistics. Now you always get better fit the more classes that you have. So what you're looking at is a sort of an inflection point, i.e. where does not seem to flatten off. And you can see that on the right of the slide that at three classes we were getting less improvement in the fit statistics. And so looking at the data, we decided to go with a three class model to explore the underlying data. So then when you run the model on those three classes, you get three classes which are represented here by the orange, yellow and the red. And here I have all those various measures across the bottom and the average scores within each of those three classes. And you can see from here that the red line, for example, is scoring lowest on the K10 stress, pediatric quality of life, and those illness perception questionnaires, and then scoring the highest on the WHO Resilience Family & Friends and this is because those latent scales are obviously the resiliency positive measures while the first scales around stress and depression, are obviously negative measures. So that red line represents a group of patients who have the lowest levels in terms of their depression stress, but also have the highest well-being, resiliency, family, friend support and an external locus of control. Conversely, the orange line had the highest levels of depression, stress and lowest levels of perceived well-being and resiliency in family and friends support and so forth. We labeled those three levels, quite simply distressed, coping and thriving. And the beauty of a latent class analysis is that you can put percentages next to those three groups. And so we had almost half our sample were thriving based on all those underlying measures about a third were coping, and then about 20% were highly distressed. 

Simon Denny [00:13:28] We then went on to look at that by the various clinics. And this is where it does get really interesting because we saw quite interesting patterns across the clinics in terms of the numbers of young people who are thriving and the numbers of young people that were distressed. And so one of the clinics that had the greatest proportion of young people who were distressed was actually at the rheumatology clinic, we had  55% who were distressed. And conversely, it was actually respiratory clinics where we have the least number distressed. And I guess that was somewhat surprising because we thought maybe moving into this, that the respiratory clinic which has young people with cystic fibrosis, which is a life limiting condition, even though, you know, there's obviously been huge improvements in life expectancy for people with cystic fibrosis. We thought that that might mean that that clinic would have higher rates of young people who were distressed. But that wasn't what we found. And I guess, conversely, when we look at the numbers who are thriving, it was actually the PKU, the metabolic clinic that had some of the highest rates and also the craniomaxillofacial clinic had the highest proportion at around 60% of people who were thriving. 

Simon Denny [00:14:47] Now, we can also flip this around. We can say, okay, so where are the numbers of young people who are distressed by clinic? And this is useful for health services planning because we run a young adult support unit providing emotional wellbeing, support to young people in these specialist clinics, and we can see where we would be expecting to get various referrals from and they do pretty much reflect what we see. So we see large numbers from diabetes because it's one of our biggest clinics, and rheumatology, although it's a small clinic, we do see quite a few referrals through from that clinic as well, but perhaps not quite as many as we should be expecting based on this pie graph.  

Simon Denny [00:15:32] One of the interesting questionnaires was the brief illness perception questionnaire. Now this is a validated measure that comes out of the University of Auckland from the health psychologists. And these are the eight questions that this brief illness perception questionnaire makes up. And it goes from things on a scale of 1 to 10, how much does your illness affect your life? Through to how much does treatment help, through to symptoms, understanding the illness and how much the illness affects your emotions. Here they are here. And one thing that's interesting here in terms of questions that discriminate between those three groups, actually the first question here, how much does your illness affect your life, was one of the best questions in terms of discriminating between those that were thriving and those that were coping or distressed. And it's quite a simple question to ask, isn't it? You just look at this first question, How much does your illness affect your life from zero, not at all, through to 10 severely affects my life,. Our data would suggest anything less than a five really puts that person in that kind of distress group rather than one of the thriving or coping groups. 

Simon Denny [00:16:53] The people that made the brief on this perception questionnaire point out that your illness perception is relatively independent, actually, of the underlying disease severity. And so illness perceptions, especially symptoms impact on life, are associated with higher distress and lower functioning, lower well-being and lower vitality. And interestingly, longitudinal studies showed that these perceptions of illness symptom impact were the strongest  predictors of outcomes and longitudinal data amongst people who had things like cardiovascular disease.  

Simon Denny [00:17:36] So I guess what this raises is how much or how accurate is patients' illness perception versus the medical teams’? And I guess ideally we are in agreement that the patient's illness perceptions are congruent with the medical teams. But we do sometimes see, you know, young people being overly pessimistic about their illness and also at the other end, optimistic. Since I put the slide together, I guess I've been thinking more about the medical team and also that sometimes medical teams get this wrong as well. And by that I mean sometimes, well, it's common in my world that young people say that they don't feel validated or heard by clinicians often when their illness is ill defined, when it's functional, involves pain, those sorts of conditions, that group of young people often perceive that the medical team misperceived how severe the illness can be for something else. It works both ways. And this tacks into why does a chronic health condition impact on young people's well-being? And this is the sort of traditional teaching that I've been taught that, you know, there's obviously health effects from having a specific illness like diabetes where you've got to monitor your sugars and take insulin and that sort of thing. But there's also the effects of having a chronic health condition, the fact that you've got to attend clinics or go into a hospital or you just feel unwell because of your health condition. But there's also the adolescent health concerns and developmental concerns. It also happens at this age and mental health transitions from school to work or higher education transition for families, all that stuff also impacts obviously on the wellbeing of young people with chronic illness. So in some sense it is a perfect storm. Interestingly, again, I guess what I was taught is that most of the health effects from these things are due to having a chronic health condition as opposed to specific illnesses. But this data  somewhat challenges that saying actually there are differences by clinic in terms of how much it seems to affect young people. What would have been interesting in our study and we did try and do this, was to try and understand the severity of the illness. But you end up with a problem trying to compare apples and oranges, how do you compare the severity of having cystic fibrosis versus a chronic rheumatological condition versus having diabetes, for example, and making that sort of standardisation of the severity is actually really tricky but fascinating if we could get our heads around it. 

Simon Denny [00:20:21] Now I put this slide and it's somewhat controversial, I think, and I'll talk about it more later on. But I guess what I've been recognising in my clinic is that increasingly we're recognising there is a whole bunch of things at play, the interface between what's gone on in the past and the current situation, and we'll talk more about this, but all lead into, I guess, this chronic stress hypothesis that leads to further ill health, be it in terms of how the chronic stress impacts on emotional well-being, mental health, but also I think increasingly recognising chronic stress also plays a role in chronic and persistent pain. Neuro divergence in terms of the early developmental stress leading to things like ADHD and perhaps more controversially I think we're increasingly recognising how this may lead to autonomic instability and inflammation. But I'll come back to some of these ideas in a minute. 

Simon Denny [00:21:22] What I want to touch on now is, I guess, an overview of what we call positive youth development or the principles by which we can provide the most effective and appropriate health and support for young people with a chronic medical illness. And what we've been working on and this is some work up here, but also through the college is thinking about this from a principles perspective and identifying key principles by which we can guide our programs and our services. And the reason for this is that adolescent health is broad in its nature and that there's very few, I guess, randomised studies that provide answers about specific programs that are relevant to our day to day work. And so instead, we draw on quite a long history and eclectic history from various different disciplines, including psychopathology, mental health, psychiatry, but also sociology, child development, brain development, and all these areas inform how we work and how we work effectively with young people. And I just want to run through these four principles now. 

Simon Denny [00:22:34] The first one, is strengths-based care, and there's this great quote from The Lancet that Australia had a big role to play in  "investments in adolescence and young adult health bring  triple dividends and benefits: now, into the future life, and for the next generation". And I think what we see in adolescence is that the investment that we put in in pediatrics needs to be continued into the adolescent period so that we don't lose those previous investments, but also recognising the benefit for the young people in front of us, their future adult lives and increasingly through George Patton's work around the next generation. But often young people are seen negatively by clinicians, they have got a stigma, I guess, by clinicians outside our field. And even George Stanley Hall, who was arguably the grandfather of adolescence health, talked about this period of storm and stress theory. And it's interesting that it really didn't start to change until late into last century with people like Gormery, Werner and Rutter that we start to talk about positive youth development. And I always remember the story about this, about a group of researchers in New York City in the 1960s that went into a local high school looking for all these developmentally challenged and stressed teenagers and couldn't find any. And  I guess it's also reflected in the data I’ve shown you today that amongst even young people with chronic illness, despite all those challenges, 50% were actually thriving. 

Simon Denny [00:24:12] Now just to generate why this is an effective approach. I've taken this from the area of adult and juvenile justice prevention programs, and this is coming from the University of Washington, who did a wonderful review of this area several years ago. And this is showing you the net benefit from investment in a range of prevention programs from early childhood through prevention and treatment programs during the teenage and young adult period in the adult programs. And so anything to the right of the red line is a net gain, and you can see this is 20,000-40,000 per game per participant. And conversely, if it's on the left side of this then you're wasting money because the program doesn't work. So this is the evidence for early childhood prevention programs. And you can see that those things like nurse home visitation provide immense value to those very vulnerable families. The key to this is the nurse visiting the home environment throughout the first couple of years of development.

Simon Denny [00:25:20] But this is the interesting one from my perspective as the, what's the evidence for investing in juvenile offenders during the teenage years? You've got some programs there that just cost money because they don't work. And most famously is the Scared Straight program where they took young juveniles into prisons and had the inmates yell at them for a day. Randomised studies have shown that they actually don't work and young people who have gone through those programs actually end up more likely to be incarcerated or involved with police. Similarly with victims, they don't work and it's just a waste of money. Conversely, things like multi systemic therapy or functional family therapy provide huge benefits per person up to $40K or $50K $60K, and these are old figures now so I imagine with rates of inflation and so forth, the investment outcomes are even better these days. But what's at the heart of multi systemic therapy? Well, it's seeing these young people as resources to be developed, not problems to be fixed would be how I characterised it. And then just for your interest, yep these things have worked in an adult but not quite at the same impact perhaps, as what you get during the teenage years. 

Simon Denny [00:26:34] The next principle is context. And I guess we have Bronfenbrenner who was really the first developmental theorist who talked about how child development happens in social environments, and he was mostly talking about things like families, communities and schools. I think one of the important aspects of the adolescent and young adult approach to health is recognising context. And we do that through the HEADSS. The HEADSS Assessment gives us an idea of the important context that young people are navigating, especially through understanding their home and school culture and peer relationships. And of course underlying all this is the recognition of attachment therapy. And we have John Bowlby and Mary Ainsworth’s groundbreaking work in this area. And obviously this just recognised that the key environment for children and young people is the home and the relationship with caregivers. I think what we're now coming to recognise is just what it means when that sort of home environment and that sort of context is severely disrupted in the context of trauma or victimisation. And from the late 1990s, we now recognise that childhood trauma and adverse experiences can lead to a variety of adverse health outcomes. 

Simon Denny [00:28:07] And this is a very famous study published in JAMA just looking at a number of childhood experience scores and the lifetime history of suicide attempt. And you can see the sort of logarithmic increase that happens once you start experiencing multiple traumas and adverse childhood experiences. 

Simon Denny [00:28:29] We looked at some of this data from New Zealand and our large population youth health surveys called Youth 2000. This has been done now over a number of years. And I think we've surveyed over 30,000 young people or teenagers in high school. And this gives you the prevalence of a number of adverse childhood experiences from physical harm from a partner to experiencing quite significant crime or war conflict through to witnessing adults in the home physically hurting each other and so forth. Some of the most common, I guess, adverse experiences is witnessing adults in the home yelling or screaming at you, which was around 63%. In Queensland we just had the results of a large maltreatment study that showed very similar results. You know, something like one quarter had experienced three or more adverse childhood experiences, which is very similar to this  data. We did look at this and the research group from Aukland about what is the association with suicide attempts and depression. And again, we used a latent class analysis to group those who had experienced either poly victimization, which is 11% being bullied as well as experiencing yelling in the home. And then the yellow group was just yelling in the home. And I guess the good news was that actually yelling in the home wasn't associated with increased odds of suicide attempts and depression. But certainly being a poly victim of being bullied in the school environment was and it was quite striking. Also five to six times the rates of a suicide attempt in depression and the red and orange groups. 

Simon Denny [00:30:38] But this line of research, I guess, has sort of really linked the emotional and physical health together. And one of the famous Harvard psychiatrists, Bessel van der Kolk, who just visited Australia, has been at the forefront in this work, and The Body Keeps the Scores is one of his famous books in this area. And he would make the case that trauma is stored in somatic memory and expressed as changes in volatile biological stress response. And so we are increasingly recognising that the early developmental trauma causes not only poor mental health, but poor physical health as well, like heart disease, cancers and greater rates of lifestyle, things like smoking, physical activity, poor self  care. So I think one of the huge challenges that we have today is how do we look after young people who have experienced trauma.

Simon Denny [00:31:31] And I really like this slide that I got from one of my psychologists that also with this recognition that trauma impacts our physical health that we now recognise actually that we can do physical things that improve our emotional and mental well-being. So it's not just top down, but what I would call bottom up approach. And by that I mean things like yoga, dance, play, spending time in nature, helping others, doing activities that bring us calmness, breathing, exercise, singing all these things, what I call bottom out. I think we're increasingly recognising just how hugely important these are for all our well-being, especially perhaps in that group of young people that have been traumatised. 

Simon Denny [00:32:19] So what I see in our health service up here in Brisbane is the 80:20 rule, and this is termed the Pareto Principle. And what I mean by this is that approximately ten to 20% of young people do have significant trauma in their backgrounds and it leads to all sorts of complications when we try to provide medical care. It disrupts their attachment obviously, but also disrupts their ability to provide self-cares, adherence to medication, and attending clinics. And so we are probably spending about 80% of our time on that 20% because it's so complex and they need so much  support. And conversely, the other group which sort of sail through things, perhaps that 50% who are thriving in some sense are a lot easier, they attend clinics, their diabetes control is usually much better. You know, all that sort of stuff. But that's not how our health services are orientated. We don't really recognise these two quite distinct populations or that 80:20% of time that takes up most of our time. Our services are more designed at the 80%, if you like, and I think this is a fascinating area is how we orientate services to be able to have that adaptability, to be able to deal with those complex and chronic young people that need their support.  

Simon Denny [00:33:40] The other point I make is thankfully attachment does trump trauma in Australia and I'll show you an example again from New Zealand of what I mean by this. So in the large population study we did of high school students, we measured a lot of adversity. I've already talked about some of that stuff around witnessing violence, physical, sexual abuse. But we also measured things like financial stress, lack of household employment, no car, overcrowding, moving frequently. And so what we did in this analysis was group all that together in a simple scale and called that our adversity scale. And this is the relationship between that adversity and depressive symptoms. So the X axis here is increasing adversity, and the Y axis is the Reynolds Adolescent Depression Scale, which is quite a well validated measure of depression amongst young people. In each one of those little dots and circles that you can see is actually a young person from this survey. So it's a scatter plot. Now, the wavy white line, which is just a moving average in a regression line that just shows you that as you increase adversity, young people experience more distress. And the makers of this scale suggested anything over that red dashed line indicated significant depression and should be before further assessed and treated. 

Simon Denny [00:35:09] Now what happens when you put the attachment stuff in there, and especially the relationship with parents or the wider family or even school connection? Here we created what we called a resiliency scale, and we then cut that into four quartiles low, medium, medium-high and high. And this is now what that same scatter plot looks like. This is amongst the students who had low connection to their family, parents and school. This one had medium connection, you can see the dots dropping, medium high and high. I'll do that again and just look what happens to all those clouds of dots. Low connection, medium connection, medium high and high. Once you get young people that have that attachment and love from their parents and family actually very few of them are over that red dotted line. And this is what I mean by attachment can trump trauma. 

Simon Denny [00:36:13] Now, the third major principle, I guess, is around what I like to say is young people's brains are hardwired to learn, and so our programs need to take advantage of that. And this is also pushing back at the idea that the young people's brains aren't fully formed. I think young people's brains are perfectly formed, just maybe not in the way that is acceptable to adults all the time. And I think it's a characteristic of young people that they want to learn, that they want to go out and explore the world. And there's probably a lot of evolutionary reasons for that, that if we didn't have young people that were hardwired to explore the world, they would probably stagnate and not be able to adapt. So I think what we need to do in terms of our health services is capitalise on that. And that's usually done based in social situations. And one of the wonderful programs we run now at the  Health Centre up here, and my favourite program, is a life skills program that's done weekly in a social situation. And it's the magic sauce that is way better than anything that I can do in my clinic, in terms of the impact and what young people are looking for. 

Simon Denny [00:37:28] And lastly, relationships. I think young people are all about relationships. And this is I think true for everybody, that having a variety of social relationships reduces stress and related risks. And we know now that stronger ties are even linked to longer life. And probably, conversely, loneliness and social isolation are some of the major issues that we see in our clinics, especially when you have a chronic illness that leaves you often precluded from normal developmental social interactions or things like neuro divergence which also can impact on social relationships. And again, I think it's up to us to look at ways that we can foster these sorts of peer relationships, but also recognise the importance of relationships obviously at home but with clinicians as well. And I think that's one of the most powerful tools that we have, is being able to form that relationship with a young person at that critical time when they are  starting to take on responsibilities, transition in their health care and making that transition in life.  

Simon Denny [00:38:36] So my last slide is about, I guess, a slightly different, finer grained thinking about what are the characteristics of these sorts of services. And what I noticed time and time again, it's all about patient clinicians who are unwaveringly positive about the young people they work with. And I'm not sure if they're born or made, but I think that's  universal across what I see as effective youth health services. I've already mentioned the importance of HEADSS Assessment and what that enables us to do in terms of formulation around risk. And I look back at what happened in New Zealand early on in my career when the HEADSS Assessment was just coming into New Zealand, and it really transformed youth health services throughout New Zealand, be it in adolescent medicine units or in school health services. That simple tool in teaching the clinicians the use and skill around that I think has been transformational . Obviously cohorting young people with their own health services. Once you do that, then we can develop the specific and appropriate services that they need. I think we need to be flexible. It's a time of life with a lot going on and they need some flexibility from health services just as simply as, you know, if they miss a clinic appointment, they don't get discharged. But, you know, opportunities to re-engage. 

And I think increasingly we're recognising that all teams, not just mental health teams, need to be able to support, treat and hold risk around mental health. The rates of mental health concerns amongst our young people in our communities are just far too high just to leave this only to mental health teams. I'll be interested to hear your thoughts on this.

Simon Denny [00:40:25] And lastly, what you see up here is agency is key. And by that I mean that all our programs are voluntary and I can't imagine them being effective if there was any coercion involved. And that's an important part, I think, in terms of an ethical approach to young people recognising their increasing autonomy in the world. And this also taps into their motivation, if you feel like you're in control and making choices about your health care, we know from the motivation studies that that's how you develop a continuum of motivation, which is likely to persist and last.  

Simon Denny [00:41:01] So there it is. I'll stop talking there. I'd love to hear your thoughts and have a wider conversation.

Ian Williams [00:41:14] Thank you Simon, that was very stimulating, very interesting presentation. I know my head is full of all sorts of questions. I'm not going to dominate the stage, we've got quite a few questions that have popped up during your presentation that I might read through if you're happy to take some questions. 

Ian Williams [00:41:34] We'll start with a couple of methodological questions. So I've got a question here about the term thriving: “You use the term thriving. Do you have a definition of thriving?” 

Simon Denny [00:41:56] No. It's just based on the fact that they reported the best outcomes across all those regions. Interestingly, another way of thinking about it would be mild, moderate and severe. But I didn't really want to use those levels because they're rather lacking in flavour. It would have been interesting if we got that a cross a diagonal and if across some of our measures we'd got high low, or low high kind of patterns, but we didn't find it. So really it was sort of a low, medium and high kind of picture, which we labeled thriving, coping and struggling. 

Ian Williams [00:42:41] So those labels really fit with the profiles that you found with your analysis. Great. Another methodological question from Daniel “Were there difficulties getting young people to complete questionnaires and were there any issues with non completion and missing data?" And related question, whether you have any tips for the audience about setting up data collection studies? 

Simon Denny [00:43:05] I think that's a really good point, Daniel. We actually had a research assistant that sat down with them and collected this data sort of individually, which is incredibly time consuming, and hence, I don't think I mentioned, it took about three years to complete the study just because it took so long, because we only had one person doing the collection. 

Ian Williams [00:43:26] One person doing all that?. 

Simon Denny [00:43:32] Look, we've been thinking about ways that we could do this more efficiently and we are exploring, obviously, electronic ways. But I guess what one of the messages from this is that we don't need to actually do, you know, ten different measures. I think we could ask it a lot more simply with fewer measures, which would obviously help with compliance and people just being able to complete the questionnaire. But no, we haven't cracked that yet. For some of our other studies we're offering incentives, but they still don't seem to work very well. So, no, this is a tricky area and we haven't cracked it yet, how you get good response rates. But the nice thing about the latent class approach is it can deal with missing data. So we can impute what's not there.  

Ian Williams [00:44:20] It sounds like a labour intensive but very effective strategy that you're taking. Well, it's a lot of work for your research assistant. Okay. So we've got another question here, which I think popped up around the time of your presentation when you were talking about impacts of adverse childhood experiences, this question is from David: "Has any consideration been given to wellbeing literacy and mental health and health literacy?"  

Simon Denny [00:44:56] That idea of literacy is an interesting one, it's not my area. I guess it's an educational term I would be hesitant to guess, but I guess behind that question is if we teach young people about their mental health, does it improve their well-being? I guess what David's getting at. 

Ian Williams [00:45:16] Yeah, I think that's the idea. I mean, mental health literacy, having a familiarity with mental health and the language of emotion, whether that's the way of moderating the impacts of adverse childhood health outcomes. 

Simon Denny [00:45:29] Yes, look, I'm not aware of any work in that area, but I'll be fascinated to know if that is an approach that's effective. 

Ian Williams [00:45:39] Feel free, David, to jump on and add to your question if you would like to. I think a related question here from Sharon is: "It's really encouraging to see the positive things that can be done. For example, you mentioned green prescriptions, yoga and exercise, that idea of  bottom up rather than everything coming from top down. Is this the sort of thing that your health service recommends for your patients? I know you said during your session that your magic sauce was the The Life Skills project. I wonder if you could talk a little bit about that." 

Simon Denny [00:46:18] ActuallyI think we still have a lot of work to do. I'd love to set up more of this bottom up stuff. I know our emotional health clinicians are really keen on yoga, for example, but we haven't managed to get that one off the ground yet. Our life skills program actually does have, I guess, the emotional literacy component, it uses the ACT framework to get young people to think about the states and what are the barriers and those sorts of things. But it's very much also activities based. So they always cook together and sit down and have lunch together and that sort of stuff. But it's very much an activity based approach, which I guess seems to work well in that context. But no, we talk about it in our clinic a lot about the importance of that bottom up stuff, things like exercise, getting outside, doing stuff that you find peaceful or enjoy. But we haven't done any sort of formal programs on that. But yes I would love to hear people's experiences on that. 

Ian Williams [00:47:22]  Thank you. So we've got a few more questions flooding in now, so we may not get through them all today. I might have to pick and choose a little. I guess, related to this, this idea of what you do in your clinic, what you find effective, connected with the ideas of those things that young people find most responsive, we've got a question here from Sharon: "How does a need for flexibility with young people mesh with the aims of the clinic? 

Simon Denny [00:48:01] Our clinicians get that, but sometimes the bigger system doesn't. So I'm more than happy to rebook young people. And I try to do that outreach as much as we can and just find out what's happening. But yes, the system isn't set up for this. It's an adult hospital. And so we're constantly having to find run arounds for this. And I guess that's just one of the challenges working in a big busy adult hospital. But you know, we're lucky in one sense. I wonder what happens in the majority, we're just a drop in the ocean when it comes to adolescent mental health services. But you know, what's happening out there. I had a young person get quite significant liver disease who missed two of the hepatologist appointments, and they were already discharged. But when you delved into it, it was because mum's English wasn't her first language. Then the young person lost their phone. I mean, these are all stories very familiar to people who work with young people, but there was no recognition from the service and there was no kind of backup plan, and it was only through constant advocating for these young people by our service that she subsequently finally managed to get in front of the adult liver doctor. 

Ian Williams [00:49:26] It  sounds like it needed a bit of advocating..  

Simon Denny [00:49:29] Yes, and that's time consuming. 

Ian Williams [00:49:34] And I think as to that question about managing flexibility, it works just to have your bookended appointment times.   

Simon Denny [00:49:44] And again, coming back to that 80:20 rule, I mean, so often our health services are designed at the 80% where everything goes smoothly. But actually, it's the 20% that probably needs the most support. 

Ian Williams [00:49:56]  Okay, thanks. We've got a related question here from Catherine: "Thanks for a thought provoking presentation. I wonder if you could comment on your experience with holding risk for young people with mental health problems. Often where our system is failing these kids as they often can't access local mental health treatment in the context of a single clinician, for example, pediatrician clinics.".   

Simon Denny [00:50:33] Great question, Catherine. This is one of the areas I've been thinking a lot about. Where this took off for me, was looking at risk in the context of school health services back home. And as part of that large population survey, we also looked at the impact of school health services on things like suicide and depression symptoms and where there was a well-functioning school health team, there was significantly lower rates of suicide attempts and depression symptoms, something like a third or half the rates, which was a huge association. Then delving into that and going in and knowing some of those clinics that are well functioning teams. The comment I remember that struck most with me was from one of the senior nurses, and these are mostly nurse-led services, was their idea of referring out was a sign of failure so that they didn't want to refer to the local mental health teams as much as possible.  

Ian Williams [00:51:35] As if they hadn't been able to provide the adequate service. 

Simon Denny [00:51:40] No, because they recognise that they are much better placed to provide that support to a young person that is experiencing distress. Now it obviously doesn't go for everything and there's absolutely a role for clinic services but when you look at the prevalence of adolescent depression, for most mild and moderate depression, they don't need to be referred on. But what this means is that you need to be able to cope with and hold risk. My opinion is that you need to have strong teams that are able to do this. I don't think it's fair on single clinicians to hold this risk. And that's again the beauty of teams and in this context school health services that act as a team. I think it is really challenging for a single clinician, i.e. a pediatrician who assesses a young person and discovers that they do have emotional distress and maybe some self-harming. They in some sense have no choice but to refer to the local clins teams. But if that pediatrician was embedded in a local team that had, you know, Monday to Friday service, had good policies and procedures had NDTs, so everybody was aware and could hold that risk seems to be a lot more sensible way forward than asking single clinicians to do this, which I think is unfair and also unfair on the mental health services that are just getting swamped. 

Ian Williams [00:53:03] And as you mentioned then a few times the importance of assessments. And I segue to a question from Fiona: "Can you please describe how to best teach HEADSS Assessments?" 

Simon Denny [00:53:19] One of my favourite ways and we did this in Auckland was actually to have what clinicians learned about the importance of the HEADSS. But then we had youth actors where the clinicians then got to get videoed doing a HEADSS Assessment role role play, and then they had to critique their own HEADS, which was part of the assessment, which was absolutely brilliant. Less work as a tutor, which was good though we obviously had to mark the final, but it was a lovely process and the youth actors we trained up so that we had a group of young people who were just brilliant actors who provided feedback as well. But that was a lovely way to train people in the use of HEADSS. And I do think HEADSS gets misunderstood sometimes. I think people see it as just a sort of a screening tool, but it's much, much more than that. I make the point that it's an engagement tool, it's understanding the context and therefore the risk for that young person, as well as obviously inquiring about areas that we need to find out about, like their drug and alcohol use, sexual health and mental health. So look, I can talk all day about the HEADSS, I'm a huge fan of it. And I think it's a wonderful tool. And I love teaching it. 

Ian Williams [00:54:43] Right. Okay, well, that's a big endorsement. Okay, So we've got time for maybe a couple more questions. From Renae: "You raised the importance of the difficulties for neurodivergent people, and earlier about bottom up therapies? Do you have any thoughts about how many treatments for neurodivergent young people focus on changing their behaviours, expressions and sociality to be neurotypical?"

Simon Denny [00:55:17] It's a good question. It's a really good question. I've been  thinking about this. Recently I heard, I dont where I heard it, but they were an advocate for the neurotypicals that maybe we need the training rather than the young people with neurodivergent meaning. And what they meant by that was neurotypicals perhaps need to be more flexible in the way that they interact with neurodivergent people. So I totally agree. I think sometimes we expect, rather than the other way around. Which I thought was a lovely point. I'm not that keen on trying to get neurodivergent people to fit into our world, but trying to see how we can support them in their world I guess would be my summary. . 

Ian Williams [00:56:06] Okay, what else have we got here about attachment from Daniel. "Attachment based interventions have been used in the family preservation and restoration space with some success, can these approaches being used in the health system and how might that be done? What might some of the challenges or facilitators be to incorporate the things?" 

Simon Denny [00:56:41] Thanks Daniel for the question. I think working with families is probably some of the hardest work that we do. I guess that's my pediatrician background talking. And it is challenging coming to that adult health service, how you do that. And it takes time. It takes flexibility. I'm not aware of any formal programs in this area that have been operating that well in the family space. And I guess more broadly, I'm not aware of many parenting programs for teenagers that have a great evidence base. Even things like the name escapes me, the Mat Sanders program up here, which is aimed at children, but he does have some programs for teenagers. And, you know, we don't really have enough research in that space. And I'd love to see more done.  

Ian Williams [00:57:44] Okay. Just one final question linking with the topic of  parents, it's back to a methods question. "During your recruitment, did parents have to provide consent along with the young people to take part in the questionnaire?” That's from Rebecca. "And  if so, were the parents open to the participation of the young person?"  

Simon Denny [00:58:14] Over 18, absolutely they could consent for themselves. I have to go back to Rebecca and see what the protocol was,  we were using the Gillick competence framework, and I'd have to go back and get more information on that, Rebecca, it's a good question. I know subsequently to this study we had argued using Gillick that 16 year olds and over can consent for themselves. But obviously in the clinical setting you would work with the families in any case. If they were there. 

Ian Williams [00:58:56] Okay, great. Thank you. Well, look, we're almost out of time. Thank you for a very stimulating presentation. I don't think we have capacity to applaud you, to thank you, but I'm sure the audience will join me in appreciation for you joining us today.  

Simon Denny [00:59:26] And thanks for the opportunity to.

Ian Williams [00:59:31] And for those who are still with us, just a couple of quick reminders before we finish up. One is to let folks know that abstracts are open for the upcoming AAAH conference. You can see the details, hopefully we'll get a web link posted to Chat and it would be great to see everybody in Adelaide in November. And as I said, abstracts are now open. And just a reminder, the next webinar is 27th of June 1 p.m. with Brianna Micolla   will be talking about a co-design strategy for optimizing adolescents and young adults aslo care also in Queensland. We'll finish up there. But thank you all for joining us. And again, thanks very much, Simon.