The Future Of

Neurodevelopmental Disorders in Children | Profs Jane Valentine and Catherine Elliot

Episode Summary

Early intervention is critical to treating neurodevelopmental disorders, like cerebral palsy. But just how early can we diagnose them?

Episode Notes

Early intervention is critical to treating neurodevelopmental disorders, like cerebral palsy. But just how early can we diagnose them?

Episode Transcription

Jessica Morrison:    00:00           This is The Future Of, where experts share their vision of the future and how their work is helping shape it for the better.

Jessica Morrison:    00:09           I'm Jessica Morrison. Neurodevelopmental disorders affect nearly one in 10 children in Australia. Examples include cerebral palsy, autism, intellectual disability and genetic disorders. Their impacts may include difficulties with movement, cognition, hearing and vision, communication, emotion and behaviour.

Jessica Morrison:    00:30           There's good evidence that intervening at a very early age can improve the long term outcomes for children with these disorders. A team of Curtin researchers is looking at ways to diagnose these disorders earlier and therefore enable earlier intervention. In this episode, I was joined by Professors Catherine Elliott and Jane Valentine, who co-lead an integrated team of researchers from Curtin University, Telethon Kids Institute and Perth Children's Hospital to discuss developments in the diagnosis of neurodevelopmental disorders. If you'd like to find out more about this research, you can visit the links provided in the show notes. This episode was recorded remotely due to COVID.

Jessica Morrison:    01:13           Jane, what is a neurodevelopmental disorder and at what age do children usually get diagnosed with these disorders?

Prof. Jane Valentine:                 01:21  Ah, well, that's a complex question, but it's important because neurodevelopmental disorders, it's a really broad group of conditions that can be present, sort of, when a child's born or can be acquired when they're young and basically they impact on development and they can have a really long term effect for the child. They can affect movement or motive disorders, learning, intellect, as well as hearing and vision, and communication and emotions. So some of the very common terms that come under the umbrella term of neurodevelopmental disorder would be cerebral palsy, autism, intellectual disability, and some complex genetic disorders. So, and there's even more than that. So it's, basically it's an umbrella term and it helps us understand that we were, we are worried about the child's development and we want to intervene early.

Prof. Jane Valentine:                 02:11  So you asked me, sort of, at what age do children get diagnosed? So obviously that's very variable for the different disorders, but the critical point is that it often takes time for developmental disorders to evolve because we are looking in a way for developmental delay so there's often a delay period, but we want to make the diagnosis as early as possible because then we can intervene at a period of critical neuroplasticity. But often what happens as you can gather is that there's a loss on the wait-and-see approach, but often parents are worried and people are worried and we need to find better ways to do this.

Prof. Jane Valentine:                 02:49  So I could give you an example. So we are fortunate to be part of the international team that have worked on the early diagnostic guidelines for children with cerebral palsy (CP). So up until a few years ago, the average age of diagnosis for children with CP was around 19 months in Australia, which is clearly very late. And everybody had been watching and waiting and hoping it might sort of not evolve into the condition, but using tools now that we've been able to train, some tools we were using all the time, like MRI, but we've introduced other tools like standard neurological examination called the Hammersmith Infant Neurological Examination and other new tools like the General Movements Assessment. Putting those three tools together and using them very early on babies, we can make an accurate diagnosis of cerebral palsy by three months of age.

Jessica Morrison:    03:42           Wow.

Prof. Jane Valentine:                 03:42  So this has fundamentally changed how we work and at PCH, we've complete- at Perth Children's Hospital, we've completely remodelled our early intervention service. We've trained over 100 clinicians in the new tools of General Movements and the Hammersmith Infant Neurological Examination, and we are seeing the high-risk babies. So we are then able to make the early diagnosis. And then of course the main aim of the early diagnosis is that we can intervene early and we can improve outcomes. And we know this is what parents want. I think that's the other thing is that it's really clear from lots of consultation with parents and families is that they want an early diagnosis. They want early intervention, of course, if it's appropriate. So I think the aim is how can we move to this opportunity for other neurodevelopmental disorders as well?

Jessica Morrison:    04:32           You mentioned neuroplasticity. Can you elaborate on that a little further and why that's important in the early intervention phase?

Prof. Jane Valentine:                 04:40  Well, children under the age of two have a really rapid period of neuroplasticity and there's very good animal evidence, and there's now very good evidence from intervention tracking in babies that we can tap into this neuroplasticity if we get in early, basically, and utilise the changing pathways in the baby's brain. So it's really important that we do that. There's a lot of evidence for early intervention and the evidence that's positive shows that we have to ... or the interventions that work are those that follow the general principles of neuroplasticity. So if you are going to intervene and create change in neuroplasticity in the brain, you have to obviously start early and you have to challenge the child in a way that fits the problem. So, you have to choose the right sort of focus. If it's motor, you've got to have the right goal.

Prof. Jane Valentine:                 05:38  But you've got to challenge that child that it's fun for them, but it's not easy for them. And it's got to be active – it's nothing passive. The child has to initiate and want to do it. You can facilitate it, but you really have to make it very task specific and drive them. You don't worry if they make errors, we, you know errors teach you things. So we've got a very task-specific intervention. It's challenging. They're allowed to make errors and it's got to be fun and it's got to be stimulating. And then you've got to do it often enough to create change. So sort of at least three times a week.

Prof. Jane Valentine:                 06:11  So I really like the term [that] Professor Janet Eyre, she's originally from New Zealand and now Newcastle, but she's got the six words, sorry the six Fs of neuroplasticity, which I think, it's an easier way to remember it. You got to choose your intervention that 'fits' the problem, it's got to be 'focused' and challenging, it's got to be 'fun', it's got to be 'frequent', it's got to be 'family-friendly' and it's got to be 'financially feasible'. So I think these are the principles of intervening and utilising neuroplasticity.

Jessica Morrison:    06:41           And if you're talking early intervention, you've mentioned you are able to now make a diagnosis possibly at three months, as opposed to 19 months. That's a, that's so much earlier and so much more time to do these sorts of interventions, isn't it? Catherine, can you explain how the Early Moves Trial will change early diagnosis?

Prof. Catherine Elliott:              07:01  Jessica, I'd love to, thank you. The Early Moves Trial is a national and international collaboration of clinicians, parents, researchers, engineers and health economics, and it's being led by Jane and myself out of Western Australia. And at the moment it's the largest trial in the world that's aiming to identify very early biomarkers or indicators of neurodevelopmental disorders.

Prof. Catherine Elliott:              07:28  This trial involves 3,000 babies from the ORIGINS Project in Joondalup and also from Midland. And what we're hoping to do from these 3,000 babies is actually learn what biomarkers will be indicators of neurodevelopmental disorders. And Jane spoke a little bit earlier about General Movements, and this is one of the biomarkers that we're exceptionally interested in. Our goal is that this project will really help babies and their growth and development because if we can identify these biomarkers, we will be able to screen babies and actually detect very, very early if they're at risk of neurodevelopmental disorders. And Jane also spoke about the benefits of that for children and families is because we can actually intervene very, very early in that period of neuroplasticity and make changes to the brain so that the babies have their best possible start in life.

Jessica Morrison:    08:29           Jane, you did touch on this earlier, but what is the evidence for early intervention? Not just with the disorders we're talking about, but in a general sense, I suppose.

Prof. Jane Valentine:                 08:40  Well, I think there's very strong evidence for early intervention. I mean, I always like to recognise that James Heckman won the Nobel Prize for Economics in 2000 for his work on showing that directing funding to early intervention demonstrates a much higher economic rate of return than if you put that money in later childhood. So I think from a very big picture enriched environment concept, the economics is certainly there for improving outcome. But then you can look down, of course, in a much more specific subgroups to say, well, what about for this population of children? How can we prove whether that early intervention helps? Recently, we were fortunate to be part of the guidelines for children zero to two with cerebral palsy. So because parents are very vulnerable, they want to do their best for the child, but we really need to be saying, well, the evidence is here, this is what we should be doing and documenting it.

Prof. Jane Valentine:                 09:38  So we were able to review, there were 16 systematic reviews of interventions for babies with CP, 23 randomised trials, and we were able to pool that all together into a document and really with a view to saying, well, "This is the evidence for early intervention". Basically in conclusion, there's very good evidence for motor intervention, for language intervention, like the Hanen, beautiful program, for helping parents and children to communicate as babies or slightly older than that is ... has very powerful evidence for improving outcomes. And there's the term 'enriched environment' where you're very much training the parent and coaching the parents on the goals, because it's not about necessarily one-on-one lots and lots of therapy time. It's about coaching the parents, that it's how they handle the child at home and how they position the child and how they talk to a child. And all those things actually alter outcomes and have got very good evidence behind them, as long as they're based on those principles of neuroplasticity that we were referring to before.

Prof. Jane Valentine:                 10:38  I think probably the other thing that's really important in these programs is that we support the parents. I mean, parenting a child with a complex neurodevelopmental disability, we have amazing parents, but there are lots of demands in raising a child with complex needs. So we do need to build in a lot of parental support and education because basically supporting the parents is very fundamental to supporting the child.

Jessica Morrison:    11:03           That sort of was leading to my next question, because as parents, we don't want to worry too much, but you do, it's natural. And you're wondering, "Is this normal in development, or is this?", or "When should he be doing this?" or "When should she be saying this?" So what needs to be done for the future parents to make this process from diagnosis or suspecting that there may be ... may be something they need to get checked out to, like you've just said, those parents of neurodevelopmental children and supporting them when they've got such complex needs?

Prof. Jane Valentine:                 11:32  Well, I think that's really important. I mean there are already good pathways, particularly in Western Australia. We're very fortunate, we have a really beautiful network of highly trained child health nurses that are there, that have ... they're there to be supportive if you've any concerns for your child's development, they have a lot of very comprehensive screening tools and they can track children into the relevant pathways. So I think there are pathways and really, the Early Moves is trying to say to us, well, can we use ... Cath alluded to the General Movements Assessment, and that's really a video that we take on the babies at two weeks and at 12 weeks and the parents upload that to us and we score it and that has a very powerful, predictive capacity for us. As I mentioned in cerebral palsy, it's got a 90%, over 90% sensitivity and specificity for telling us whether you'll have cerebral palsy or not.

Jessica Morrison:    12:24           Wow.

Prof. Jane Valentine:                 12:25  Really the question is, can we use these videos to help us with identifying whether you are going to be at risk for learning disabilities or other conditions. So then of course we are not relying on major developmental milestones. We're relying on these abnormal movements, which are driven basically from the brain. They're like a window into the brain and they're present up until five months of age and then they go. So really if we're going to look at them and use them, we have to get in early. And that's really where the Early Moves studies come in to say "What is the power of these early general movements to help identify at-risk children or parents, and then channel them into our pathways earlier?"

Jessica Morrison:    13:09           Sounds really, really fascinating. Catherine, we might actually talk about the next steps for the research and the future of early detection and the Early Moves program. Are you able to elaborate a little further on what's next and how we might be able to see this hopefully roll out even wider?

Prof. Catherine Elliott:              13:24  Yeah, thank you. The goal for all children is to have the best possible start in life. And part of that is early detection and early intervention. And currently at the moment, Jane was talking about the General Movements, the videos, these are scored by highly skilled clinicians that have years of clinical experience and then have extra training above that. And at the moment, there's obviously a limit to the number of videos that can be scored. And so our goal is actually to make this available to as many children as possible.

Prof. Catherine Elliott:              13:58  And we've teamed up with Professor Venkatesh at Deakin University to develop machine learning and artificial intelligence to actually develop algorithms to score the General Movements Assessments. And these algorithms will be refined with data that's being continuously added. And the benefits of this is that we'll be able to screen many more babies and babies potentially in rural and remote areas. And we'll therefore be able to refer the babies to appropriate services if concerns are identified and also to early intervention services. So I think that there's huge potential for machine learning and artificial intelligence to work with health to have better outcomes for these babies.

Jessica Morrison:    14:45           What inspired you both to get into this field of research? Jane, can I start with you?

Prof. Jane Valentine:                 14:51  Oh, well, I mean, I've been working in this area for a long time. I mean, I think I just feel the opportunity for change. We know the opportunity for change in infants is amazing and their opportunity to change. And I think always our goal is early diagnosis. And I think when we started to work with General Movements in cerebral palsy, it fundamentally changed how we work clinically and think it became very clear we had to look at an opportunity to see if it can be helpful in our other neurodevelopmental disorders. Now this is being looked at in other smaller populations throughout the world and always high-risk populations, so always using babies that were born very prem, so already had high risk. So we in Perth, we have this amazing population of people that are keen to engage in research. So we were really fortunate to link with the ORIGINS Trial out of Joondalup who are enrolling a whole population of babies born at Joondalup. So we said, wow, could we join you? Can we look at General Movements and then, can we then assess these children's cognition and learning at age two?

Prof. Jane Valentine:                 16:01  So we really, I think in part, our isolation, very isolated for the last number of years, but it's been, it has completely played into our hands and maybe being able to answer this question for everybody, which is, we're really fortunate and we've been really supported by St John of God Midland and Joondalup in actually enrolling these babies. So it's exciting and it's important and parents are keen. They're amazing.

Jessica Morrison:    16:27           Well, I love that. And what about you, Catherine? What inspired you to work in this area, in this space?

Prof. Catherine Elliott:              16:33  I think I've been obviously very lucky to work with Jane Valentine and the team for many, many years. And one thing that is fundamental in all the work that we do is using the latest evidence to inform clinical care, so to inform the different interventions that are used and the different assessments. And I think we're really, really inspired to actually add to the body of evidence in early detection and early interventions. And it's really seeing the outcomes for children and families through this work.

Jessica Morrison:    17:05           How can people who are interested in this research area stay up to date with your research developments?

Prof. Catherine Elliott:              17:11  They can go onto the Perth Children's Hospital website, as well as the ORIGINS website or the Telethon Kids Website. And I think we've got links to those in the show notes as well.

Jessica Morrison:    17:22           Perfect. I was going to say, we'll pop them in the show notes. You've done this before! Thank you so much, Catherine and Jane, for speaking with me today. A really, really fascinating topic and it has a very bright future by the sounds of it with the work that you're both doing. So thank you very much for coming and chatting with me today.

Prof. Catherine Elliott:              17:38  Thank you so much for having us.

Prof. Jane Valentine:                 17:40  Thanks a lot. Thanks very much.

Jessica Morrison:    17:42           You've been listening to The Future Of, a podcast powered by Curtin University. If you've enjoyed this episode, please share it. And if you want to hear from more experts, stay up to date by subscribing to us on your favourite podcast app. Bye for now.