Transcript
[MUSIC PLAYING]
We are the Association for Child and Adolescent Mental Health, or ACAMH for short. And this is ACAMH Learn.
Hi, there. My name is Sydney Steven. I'm a senior researcher at the Royal Children's Hospital and the Murdoch Children's Research Institute. And I am here to talk to you today about our new clinical practise guideline for anxiety in children and young people. Later on, I'll be joined by my colleague, Professor David Coghill, who's going to take you through lots of the clinical aspects of the guideline. But I am going to talk to you today about the development of this clinical practise guideline.
There is a QR code there that you can scan to have a look at the guideline and follow along if you'd like. It is quite long, fair warning, but I'm just going to talk to you about the development of these guidelines. Part of our strategy as a mental health strategy for the hospital was to develop clinical practise guidelines for common mental health conditions. And this guideline for anxiety was the first of a theoretically a suite of guidelines.
We're working on the second now, but we decided that anxiety was first the most prevalent mental health disorder in children and young people in Australia. So 7% of Australian children and young people suffer from a diagnosable anxiety disorder. This is from a Young Minds Matter survey in 2014. That's the most recent national survey of mental health. So we know that it's gone up in the last few years, especially since COVID, and it is higher in other parts of the world as well, in the US and the UK.
I think it's 12% in the US, something very similar in the UK now. So we know that it's very prevalent and it is the most common mental health disorder in children and young people. The other reason I think we decided to do this was that anxiety is a bit unique in its presentation and that it is a normal part of growing up. In many instances, it's short lived, and it's developmentally appropriate for children and young people to experience some anxiety, especially around new experiences like making friends, maybe going to school.
But some experience anxiety more intensely and more often than others, and it can often impact their ability to fully participate in life. And that's when it becomes a problem and can need professional help. For parents, that's quite a difficult line to cross in terms of what is normal anxiety and what is something that might need professional help. We also know from our surveys that there is inconsistent clinical care, different clinicians between different patients across different departments in the hospital as well.
So we know that it's something that was not getting consistent attention across the board. And we know that there's a lack of existing clinical guidance. I'll talk about this a little bit later, but as part of the development of a clinical practise guideline, we assess for existing clinical practise guidance. And we found that there's actually no evidence-based clinical practise guidance for anxiety in children, young people in Australia.
And so that was quite a problem. So we decided to pursue this guideline for anxiety. Now, what is clinical practise guidance? And this seems like a really simple question, but I think it's important for us to understand that clinical practise guidance is actually a new concept. It's something that's just come up in the last 20 years or so, and it's something that is designed to be a compilation of all the available evidence so that clinicians can have a one stop shop for a specific disorder.
So it's designed to be a gold standard guide for clinical decision making, and it's intended to aid that decision making, reduce variation in practise, and then promote evidence-based clinical practise. So it hits a few boxes in terms of just getting all the bits together, and it can be that one resource for clinicians to use when they need it. There are many different types of clinical practise guidance. So today I'll be talking about a specific type, which is an evidence-based clinical practise guideline and how we develop that.
But there are lots of other different types of guidance and they're differentiated based on development process. So an evidence-based clinical practise guideline, I'll get into the nitty gritty of what that process looks like. Consensus statements are primarily based on consensus, practise parameters, organisation or service provider position statements. There are so many different types of guidance and different names for that guidance.
They all have their strengths and limitations, I'll get into a bit of the strengths and the limitations. But most importantly, I'll go into evidence-based clinical practise guidelines and how those are different. So the term evidence-based means we use an evidence-based systematic process to develop. That does include systematic process to minimise bias. We report our methods, just like you would with any other research or systematic review so that anyone can reproduce that guidance.
We use a multidisciplinary development team that includes stakeholders and consumers. So anyone that would use or be affected by the guideline should be involved in the creation of the guideline. The guidelines consist of specific recommendations, which are short, maybe a paragraph of a specific trinket of guidance that has one purpose, and they're all linked to evidence. And they can have accompanying tools, including care pathways and algorithms.
So sometimes there's a little bit of overlap in this type of guidance. They're trustworthy, reliable, and usable, but they are quite resource and time intensive. And that is where the limitation of clinical practise guidelines comes in because, as I'll get into it, this guideline for anxiety was an 18 month development time. And this is what that circle looks like. I will say that there is a strong tradition of evidence-based clinical practise guidelines in the world, including from nice and sign.
These requirements are based off of the National Health and medicine Research Council in Australia. So these are Australian requirements. We are based in Australia. Despite my accent, which is a bit misleading, these are in an Australian context. But as you can see, it is a circle. So we establish the group, we do the evidence review, we formulate the guidance, we then send out and publish the new guideline.
And then, as with most research, it becomes outdated. The standard time to become updated is five years for clinical practise guidelines. And so we start the process over again. It doesn't always happen the way it should, but that's why it is a circle. It is a loop and should be a progression of that. So the first phase of development consists of three to six months.
And it is actually a really, really important part of development of a clinical practise guideline because it creates that foundation and scaffolding for the creation of the guideline, and really what the end product is going to look like. First step is establishing that multidisciplinary development group. So that includes researchers, clinicians, people with lived experience of that disease or disorder, and consumers.
So anyone that we'll be using or affected by the guideline should be involved in the creation of the guideline and have some say into what it looks like. The next is the group will work and discuss a scope and define a topic. So likely a topic perhaps is already decided going into this group. And the development group should be informed by what the topic is, and experts in that specific sector.
But a scope and what the guidelines actually going to look like, and very specific parts of that disease that you might focus on are informed by the development group. We then do a process using a tool we call adapt 2. And this is to identify existing guidelines to adapt or adopt. And that's part of that circle that we talk about in terms of if there is a guideline that maybe is outdated but was really rigorously developed and it has some really good guidance in it, you can choose to adapt or adopt it at this point, and it can help you skip over some of the steps that you might do and help to inform what the guideline might look like.
And it's actually really, really helpful when you don't have to just start things from scratch. You can actually learn a lot from an existing guideline that might be outdated. So for this specific guideline, we were not able to adapt or adopt any guidelines unfortunately. But it is a really important step in ensuring that we're not overlapping with any existing guidance or literature.
And then we identify clinical questions and their priority. Now, I think this is the part of development that makes this process really unique and makes this a guideline, and not just a systematic review of evidence or other types of research, is that with the group, we identify specific clinical questions that we want the guideline to answer essentially. So for example, this is from the anxiety guideline specific identification and assessment questions.
So what are the clinical features of anxiety in children and young people? They identified that was a high priority as you can see on that right hand column. And so this is a really, I think, important part of this process because this is a guideline that is going to be used in practise and we need to make sure that whatever is in it is practical. As much as we love to say that we need to follow the evidence and we need to do this, it also needs to be able to be used and be practical in the moment.
And so this is what helps us create that scaffolding of making sure that we're answering the right questions, and we're getting clinicians the guidance that they need. You can also see in that middle column it says narrative or evidence. This is the type of review that we would do. So for an evidence review, that's a systematic evidence review.
In a narrative review, I won't go into too much detail about it, but a narrative review is really a conversation with clinicians and that consensus base that's based in evidence. So it really is something that we can have a bit more wiggle room in terms of that systematic evidence review. So that's that first step. Like I said, it's three to six months ideally on the lower end of that.
So you can try to get through as many things as possible. But sometimes it just happens, especially getting a group together like a guideline development group. I think the guideline development group had 20 on it. So organising 20 schedules to get together all at the same time is really difficult. So sometimes it can take a bit upwards and that's throughout the whole development as well. So the next phase of development is the evidence reviews.
And this is where a small team, for example, myself and a few others would take away that the guideline development group tells us. And then we sit in a room for six to 12 months and do evidence reviews, and then we bring them back to the guideline development group. This is where the miracle happens, as one of my colleagues likes to say. So we systematically search for evidence according to the clinical question.
So each of those clinical questions identifies its own evidence review and its own PICO criteria. And then once we've done that, which is a huge chunk of work in itself going through all of the screening and screening and then full text reviews, we do the whole bit. We come to then appraising the methodological quality and bias of the evidence and rating the evidence quality.
So we use a standardised method called GRADE to do this. Well, first we assess the methodological quality to see if it meets our standard to be included, and then we rate the evidence quality according to GRADE. And GRADE stands for grading of recommendations assessment, development, and evaluation. And it's a standardised framework used to reflect the strength of evidence and recommendations. So there's two steps.
This step one occurs during this phase while we do evidence, and it's the evaluation of evidence within each clinical question. So that includes the number of studies that come up in that evidence reviews. Perhaps there's only one or two studies that come up in an evidence review. We need to assess those for quality. The design of each study, the risk of bias, any inconsistencies or lack of precision in that method or perhaps in the report, and then the directness and transparency of that evidence, transparency, apologies, of evidence as well.
This is really important because we need to be able to trust the evidence that we do use going forward. And so this helps us to do that. The next step occurs in the next phase when we start to write the recommendations. But this is a really important step because we can evaluate the quality of the proposed recommendations according to that evidence.
So this is a really important step because it considers the usability of the recommendation, the acceptability, equity of that recommendation, and any desired or undesired effects. So anything that could happen as an effect of this recommendation. And any resource requirements, which is really, really important when we're talking about implementation or any economic effects of the guideline as well.
After we've done the rating of evidence quality using GRADE, we will extract, summarise, and synthesise the data to give to the development group. We get a big old report full of all the evidence from all of the evidence reviews that we've done, and that's when we can really start to get into the nitty gritty of writing the recommendations. And this next phase, we start to formulate the guidance.
So we synthesise the evidence and that's done with the development group. So we basically give them the evidence and say interpret this for us. What does this mean in a clinical context? How can it actually be used in a clinical context? What's maybe perhaps changed? What's something that we need to then inform using the evidence and then have a recommendation for?
And also thinking about those questions as well. So each of those clinical questions need to be answered with a recommendation. We draft and finalise recommendations, this is a lot of back and forth with the group. And then we do that second step of GRADE, which is to rate the recommendations according to quality. And they get a little tick, on a little circle of four, and they get either one out of four, two out of four, three out of four going up.
And then as well, once we have all the recommendations, which consists honestly, is probably the shortest part of the guideline because each recommendation is only about a paragraph long. We write justification, clinical and narrative context for each of the recommendations and each of the questions that we answered. The justification bit is a really important part of this because included in all of this big guideline and all of the discussions that we have as a group, I think probably we met more than 20 times with the guideline development group during the development of this.
We need to be able to justify what comes out of it. And so we write paragraphs and justification and implementation guidance for all of that. Now I did say earlier that we get a recommendation, which is a little paragraph, but there are some different types of recommendations. And this is something that is according to GRADE, but also can be changed within different guidelines depending on their process or just their preference in terms of what they will term recommendation.
But it's pretty standardised in terms of the three layers. So the first is an evidence-based recommendation. Evidence is sufficient to inform a recommendation made by the guideline development group. So the recommendation is backed by the evidence. The next is a clinical consensus recommendation. And this is where in the absence of evidence which either we did a systematic review and nothing came up. Perhaps the evidence wasn't of high enough quality, perhaps we had a bit of debate, or we didn't do an evidence review for that specific question.
The clinical consensus informs the recommendation. And then we have a clinical practise point. So this does not get the term of recommendation, and that's because we did not seek the evidence for that. And this is something specifically that the guideline development group has put forward and arose from discussion. So we don't ever start with a question for these clinical practise points, they're just something that comes up.
Now this is where some of the debate comes in that it can still be an evidence based guideline with no evidence-based recommendations. If we've done the evidence review, we've followed the process, we've done great and still we don't have any evidence to inform an evidence-based recommendation, we can still have a guideline that consists of clinical consensus recommendations or clinical practise points that can be termed in evidence-based clinical practise guideline.
So after we formulated the guidance, it's time to publish. It's time to disseminate, finalise the guideline content. Public consultation is specifically a really important part of clinical practise guidelines because we need to make sure that the public, including consumers and any stakeholders, clinicians, anyone that, again, will be using or affected by the guideline has a chance to say their piece. And so usually we'll send it out for three weeks with some feedback mechanism and can make lots of changes from them.
There's also lots of opportunity to obtain endorsements. Our guidelines endorsed by the Royal College of General Practitioners in Australia, the NHMRC and NICE and SIGN all have their own processes to do that. And then we disseminate and implement. Now I will say that we are still disseminating and implementing the anxiety clinical practise guideline for children and young people. And that's part of what this process is doing presentations like this, going to conferences, but also just sending it out to large body of stakeholders, anyone involved in the public consultation, working with lots of organisations to have their clinicians use it.
So that's still is very much an ongoing process and I suspect will be ongoing until the guideline is out of date in 2028. So once we've done this whole process, we have a guideline. What's the output? It seems like a really large undertaking, again, 18 months. We're still working to disseminate and implement this guideline.
What do you get out of it? And I think I get this question a lot because I've devoted so much of my time to this document. The guideline itself is 86 pages and there is 63 recommendations I believe in it total plus methods and clinical context and so much text and information involved in it. Behind that, we have a technical evidence report which is over 200 pages.
That's that big report I mentioned after we do the evidence reviews that we give to the guideline development group. So this is a version of that. It includes everything that we've excluded, our methods, all of the prism diagrams, all of the discussions for the narrative reviews, and any information that you could want. It's not for the faint of heart.
It is a very large, scary looking document. But that's what we get out part of this process. Noting that these two documents, the guideline itself and the technical evidence report are very large and can be very overwhelming. We have done some other work on the side to summarise or adapt the guideline to be a bit more user-friendly and a bit more available in point of care.
And that's what we've done with the Real World Children's Hospital. They have a clinical practise guideline committee that develops these short snippets of guidelines for that quick reference for that point care clinician. And so that's what we've done here. It's about two pages, and it really ticks all the boxes, all the quick bits. And then we've also created these flowcharts.
My colleague Professor David Coghill will go through the clinical bits of all of this and follow this flowchart. But I think this is a really good visualisation of all of the steps involved in treating a child for anxiety and even all the different bits of care planning and psychoeducation that goes into that as well. And then in particularly important part of this as well is the adapting this for the consumers, for parents and carers, for children with anxiety.
And so we have developed this guide for parents, carers, and supporters of children with anxiety. And it really does follow lots of the parts of the guideline. I'll talk more about this in another presentation if you're interested. But you can scan the QR code for clinical resources for anxiety children and young people. The guide for parents and carers is also on there.
And thank you very much for your time. [MUSIC PLAYING]