Episode 8 (Clinical Professor Jane Valentine)
BOTULINUM TOXIN AND SURGICAL INTERVENTION IN CHILDREN ADOLESCENTS WITH CEREBRAL PALSY: WHO WHEN AND WHY DO WE TREAT?
Combined reflections on this paper (Dr Pool and Dr Thornton)
This is an excellent example of what can be achieved with an integrated, multidisciplinary team. Population based data provides a wealth of information that can be so easily translated into practice because it is essentially already based on everyday practice. This cycle of both being informed by and informing practice makes knowledge translation almost seamless - a constant learning process that stimulates questions and solutions to finding the answer.
There are some great statistics here to take in, and this can be used as part of our discussions with team members and families particularly when planning therapy or medical interventions within the context of a child’s life.
There is no doubt that sometimes a myth can be perpetuated to the point where it is considered truth! One of these myths that can in fact be harmful is that regular use of botulinum toxin can result in deteriorating muscle morphology and function. What this data shows is that function, as described by GMFCS levels, were in fact stable in a large proportion of children with cerebral palsy. Further to this, the majority of children received only 4 or less botulinum toxin treatments. For the 3.7% of children that received more than 20 treatments, this was attributed to those with complex movement disorders. The focal usage of botulinum toxin is often favourable because it is targeted, alleviates pain, improves comfort and enables function. The alternative is often medications that have sedating side effects.
What is also clear through this paper and evident through our discussion with Clinical Professor Valentine is that the usage of botulinum toxin is always a new decision, with the question of “should we be doing this and what is the least dose we can use?”
Building on from the podcast with Dr Sian Wiliams is that the use of botulinum toxin is more than just the “R1 and R2.” The link to participation is always made - the use of botulinum toxin is to address issues related to spasticity, to enable more function, more steps and ability to participate in activities that drive cardiovascular health and by doing so, enable participation that may not otherwise be possible. Indeed, we also know that if we do nothing, “children will run into more problems with avoidable complications. It is a line of experience and data to note that we are not over treating”.
Finally, what is really clear here is that botulinum toxin is never used in isolation. It is part of a suite of interventions that aim to improve function but it is also delivered within an integrated service and multidisciplinary team.
Episode 7 (Dr Claire Willis)
A realist evaluation of a physical activity participation intervention for children and youth with disabilities: what works, for whom, in what circumstances, and how?
Combined reflections on this paper (Dr Pool and Dr Thornton)
It is so wonderful to see more and more work on participation in the literature. It is an area that we talk about a lot as we understand that there are really limited upstream effects in our usual practice. It really is a mind shift and as Claire says in this podcast it is “no longer ok just to be handing out information to families, we need to be more proactive in doing this”.
In this paper, a realist evaluation approach is used and this facilitated the identification of the contexts, mechanisms and outcomes of the intervention. This approach doesn’t just tell us what happened but how the intervention worked. Understanding the how is so important because this is what is needed to translate these effective interventions into practice - no matter where we might be! By understanding the active ingredients to an intervention, we are then able to contribute to change.
Going straight into the participation level is certainly a shift in thinking but when you understand all of the outcomes that result from this approach it is worth taking note! The encouraging factor to all of this is that it really isn’t that complicated. In fact, if you prescribe to the “F-word” model, you are partly there already! That is encouraging!
How can we start to implement this though? Well if you look at the identified contexts here it is a great starting point. The contexts of learning, social, family and safe are worth teasing out and then when you consider the mechanisms both from the perspective of children and their parents which collectively include choice, fun, friends, specialised health professionals and time - you are shifting your approach to one that is more participation focused. We always ask “how” do you do this? This paper provides such a great starting point if the participation approach is something new to your practice so it is definitely worth a read!
Episode 6 (Dr Sian Williams)
MEASURING SKELETAL MUSCLE MORPHOLOGY AND ARCHITECTURE WITH IMAGING MODALITIES IN CHILDREN WITH CEREBRAL PALSY: A SCOPING REVIEW
Combined reflections on this paper (Dr Pool and Dr Thornton)
When we talk about muscle health, we are talking about the quality of the muscle which relates to how a muscle works when we want it to work! We know that people with cerebral palsy have less muscle strength and this is attributed to the neurological lesion itself as well as the quality of muscle. These features impact how a muscle works and this includes the load and capacity under tension and the sustainability of the contraction.
As therapists, we talk about muscle more than we probably realize. Everytime we talk about a functional task whether it is gross motor, fine motor and communication, it all relates to movement and movement relates to muscle. This is why this scoping review is so important for all of us who work with people with cerebral palsy. Understanding that muscles need to be as healthy as possible, performing at its optimum ultimately influences not just body structure and function, but activity and participation.
It is clear that there is still a whole lot of work to be done, particularly when relating muscle health straight through to participation. Our understanding of the science behind muscle structures, how it responds to training and how it develops over time informs us on when we need to treat, how much to treat, what technique we need to use and in what context!
What I took away from this is the absolute certainty that it all comes back down to task specific training - not just from a neuroplasticity perspective but also from a strengthening perspective. Like Professor Novak said “whose brain is doing the work? Is it the therapist or the child?” Similarly, here we can also say “whose muscles are doing the work? Is it the therapist who is positioning, manipulating, facilitating the movement or the child?”
Ultimately, doing task specific training that is combined with the principles of muscle strengthening go hand in hand. If we are doing the work, we are altering the mechanism of how muscles respond in function which in daily life is when our hands are off! (unless we believe that we can leave our hands on the person through every part of every day!) At the end of the day, this knowledge just reinforces and builds on the reason why we need to be evidence based because this is what ensures the provision of ethical practices. Our role as allied health professionals is a great one, with great reward but also great responsibility and privilege.
Episode 5 (Assistant Professor Olaf Verschuren)
24 HOUR ACTIVITY GUIDELINES FOR CHILDREN AND ADOLESCENTS WITH CEREBRAL PALSY: A CLINICAL PRACTICE GUIDE
The link below includes the questionnaire/checklist and the infographic.
Combined reflections on this paper (Dr Pool and Dr Thornton)
With the power of technology, we can speak with amazing researchers from all over the world! Olaf is an exceptional researcher from The Netherlands who has contributed significantly to what we know now. When it comes to exercise and physical activity - not just doing it but assessing it, Olaf has been part of its development.
His work has now evolved to include nutrition and sleep which feeds into the “whole day matters” philosophy. We like how he talks about three main aspects that need to be considered over 24 hours. You have sleep, sedentary behaviours such as sitting, lying and reclining and physical activity to varying levels. These three components need to be optimised for better health and well-being benefits for all people. These recommendations are relevant for children with cerebral palsy just as much as they are relevant to the general population!
Accompanying this paper are some useful tools that can be used to start a conversation about these three components.
A questionnaire was developed alongside consumers i.e. clinicians, parents and children that acts as a guide for a meaningful conversation. The researchers encourage families to look at this questionnaire before going to their rehabilitation appointments as it is likely to have important implications on their overall care.
In addition to this, the team developed an infographic that summarises the 24 hour guidelines beautifully. It is easy to read and makes a great addition to the waiting room reading materials! Olaf and his team recognise that one size doesn’t fit all so there may be some challenges in fully implementing these guidelines for non ambulant children in particular.
So what is important here is that we view physical activity and breaking up sedentary behaviour differently - every little bit of activity helps and that little bit looks different for everyone. These are all things that we can incorporate into our practice and it starts with a conversation that recognises the importance of looking over the 24 hours.
Episode 4 (Professor Andrew Whitehouse)
INTERVENTIONS FOR CHILDREN ON THE AUTISM SPECTRUM - A SYNTHESIS OF RESEARCH EVIDENCE
Dr Pool’s reflections on this paper.
What a huge piece of work! It is so important for clinicians and researchers to be aware of this work and the development of a roadmap for interventions for children on the autism spectrum. We were so privileged to have Andrew on the podcast - the conversation really helped me to understand the depth of work that was put in and what it takes to develop guidelines that inform policy.
What really stood out to me was what makes up “evidence based practice” a trilogy of scientific evidence, clinical expertise and consumer priorities and preferences. It is so important to ensure each of these areas are adequately weighted because this is what ensures that we provide ethical practice. I was so struck by the “call to action” for researchers and the absolute importance of ensuring that we are evidence based so that we provide ethical practices. It is simply unethical to provide interventions that are not grounded in evidence based practice and this translates into all areas of child health.
From a methodological perspective, I was challenged in my thinking to develop a greater understanding of currently novel research designs to reflect our clinical practice. I learnt so much from this conversation and I know that clinicians and researchers will take so much away from this interview.
Dr Thornton’s reflections on this paper.
We were very fortunate to have Andrew talk to us about this huge piece of work the Autism CRC has completed. There are many interventions available for children on the autism spectrum, which can make learning about and navigating them challenging for families, clinicians, and educators. The report we spoke to Andrew about includes two reviews; a narrative review, to provide an overview of interventions for children on the autism spectrum and their use in Australia, and an umbrella review, to understand and summarise the evidence base for interventions for children on the autism spectrum.
I think the take home message from these reviews is this; When choosing interventions for children on the autism spectrum, it’s important that they are selected on an individual basis, within an evidence-based practice framework, combining the best available research evidence, with evidence from clinical practice, and importantly, take into consideration the preferences and priorities of the child and family.
Please register via the Autism CRC website for FREE access to the report.
The report includes a broad overview of intervention for children on the autism spectrum, including the principles underpinning all interventions, and the rationale behind each category of intervention, such as developmental interventions, behavioural interventions or technology-based interventions.
It also provides a comprehensive review of the scientific evidence for the effects of interventions for children on the spectrum, both therapeutic and otherwise. The evidence review was conducted to international best-practice standards, including only the highest quality of evidence.
A total of 58 systematic reviews were included in the review of evidence. These drew on data from 1,787 unique studies.
Episode 3 (Professor Iona Novak)
STATE OF THE EVIDENCE TRAFFIC LIGHTS 2019: SYSTEMATIC REVIEW OF INTERVENTIONS FOR PREVENTING AND TREATING CHILDREN WITH CEREBRAL PALSY
Dr Pool’s reflections on this paper.
I can’t even begin to describe how encouraged I was - not from just reading this paper but also from our conversation with Iona. It is incredible to think that therapists and researchers have answered the call to engage in more research to improve our evidence based practice! Now we have the wonderful challenge of sifting through all of the research!
This paper is such a significant paper for our field. It provides a practical way to review a large body of literature in a meaningful way for both the clinician and family. In our conversation with Iona, a few things really stood out to me. I love the perspective of being “pro-choice”. As clinicians, our job isn’t to dictate what should happen. Laying out the evidence, or perhaps the lack of evidence enables people to make informed decisions that take into account their own family situation, beliefs and perspectives. Iona takes it one step further though - she engages in an intelligent conversation with families.
The question isn’t just “What is the most effective option for that particular goal” but “is there a more effective option?” This is such an important point because if something is more effective, it minimises the time it takes a child and their family to be away from important aspects of life such as school, fun, family and friends. I think that as evidence based clinicians we can get so frustrated when we see internet testimonials or non-evidence based methods being sold as evidence based methods. When we see this, instead of being frustrated, our conversation should be - “is there a more effective option to achieve this goal?”
The next thing that was like a light bulb to me was how to link therapies to neuroplasticity with the phrase “whose brain is working - is it the therapists or is it the childs?” It is so true that the hands off approach just doesn’t seem like therapy sometimes, yet it has the support of good quality science to achieve meaningful outcomes. Using this way of critical thinking actually breaks down all of the non-evidence based therapies that are being sold where a hands on approach is often displayed with the therapist performing maneuvers and making the adjustments to enable the child to achieve a sense of “normal” movement. So lets ask questions!! What is so encouraging is that the body of evidence is very consistent. I will be listening to this podcast many times over!
Dr Thornton’s reflections on this paper.
What an inspiring conversation with Iona about this paper, which systematically describes the best available evidence for cerebral palsy interventions in 2019, and highlights areas for more research.
Since Iona and the team published their first paper in 2013, there has been an exponential increase in the number of systematic reviews and clinical trials in the field. This is really exciting, but also means that it’s really important that evidence is synthesised in a way that is easily digestible for the people who use it.
The traffic light system, with the bubbles that indicate the magnitude of evidence for each intervention, along with the “worth-it line”, are a quick and easy tool to use to identify the interventions with the highest level of evidence available to help people with cerebral palsy to achieve their goals.
Episode 2 (Dr Sue McCabe)
PATTERNS & RELIABILITY OF CHILDREN'S SKIN TEMPERATURE PRIOR TO & DURING SLEEP IN THE HOME SETTING
Dr Pool’s reflections on this paper.
I learnt so much from this paper - it really encourages us as clinicians to understand the science behind sleep because this can have a significant impact on a child and their family’s quality of life. What we learn from this paper are the many factors that influence sleep onset and it is clear that we can influence these factors. I did not realise the role of skin temperature on sleep and in this podcast, the discussion we have around the Distal Proximal Gradient truly does broaden the scope of my thinking! An amazing feature of this study is how these measures were made within the home setting, highlighting the practicality of assessing and implementing these strategies within our clinical practice.
Dr Thornton’s reflections on this paper.
This was a really interesting paper and discussion with Sue. We all intuitively know how important sleep is for us (and how we feel when we don't sleep well!), but understanding the science of sleep takes this appreciation to a whole new level. This paper has taught me that prior to sleep, there is a quicker rise in the temperature of segments of our body that are further away from our midline (like hands and feet), than there is in segments of our body that are closer to or form part of our midline (e.g. trunk). As temperature rises in areas that are further away, our core starts to cool down, which is what helps us drift off to sleep. It’s fascinating that we know a lot about these changes in basically all populations except school aged children, especially given the important role that skin temperature plays in sleep quality. Importantly, when we talk about sleep quality for children, we are often talking about sleep quality for parents as well - children’s sleep routines can impact the whole family.
One of the key features of this study too is the pragmatic nature of the data collection - lots of sleep studies have been conducted in laboratories or hospitals, whereas Sue’s study was done in the home, more accurately reflecting real life sleep practices. This study shows that data on skin temperature can be reliably collected in children’s natural environments - which is an important factor to consider if you are looking to implement this clinically!
Episode 1 (Dr Dayna Pool)
LOCOMOTOR AND ROBOTIC ASSISTIVE GAIT TRAINING FOR CHILDREN WITH CEREBRAL PALSY
Dr Pool’s reflections on this paper.
This study is significant for me because it demonstrates the potential for a motor based program to be implemented for children with cerebral palsy that have more physical assistance and equipment needs. I was surprised with the fact that there were no significant differences between the groups on the main outcome measures. However, this is also very insightful because it does also suggest that clinicians may not necessarily need to have large, sophisticated and expensive equipment at their clinic to provide this intervention. Both groups did make changes over time reflecting the potential efficacy of locomotor training with no adverse events being reported. For clinicians and researchers, it is a great starting point for exploring potential interventions for physical activity in children with cerebral palsy.
Dr Thornton’s reflections on this paper.
I think the findings of this paper are really interesting and raise an important point for therapists; Lack of access to RAGT devices shouldn’t be considered a barrier to improving the mobility of children with cerebral palsy - “traditional” locomotor training provides just as much in terms of motor outcomes for these children. I also found the differences in goals across GMFCS levels interesting (although not surprising). They really highlight that mobility plays an important role in everyday life for all children, and that future research should look at the impact locomotor training has on the health and well-being of children with cerebral palsy.
Episode 200!
The team at the ResearchWorks Podcast are celebrating 200 episodes! With over 4 seasons, invited collaborators with the EACD and AusACPDM conferences and Transformative Practice Award Winners for 2024, it has been a stellar journey. 🚀