Episode 29 (Associate Professor Jenny Downs)
ENVIRONMENTAL ENRICHMENT INTERVENTION FOR RETT SYNDROME: AN INDIVIDUALLY RANDOMISED STEPPED WEDGE TRIAL
Reflections on this episode (Dr Pool)
This is such a great paper with so many take-aways that we can implement in our practice.
Firstly - the study design is one that is really worth taking note of. We know that research, especially in rare diseases and heterogeneous populations, is an incredible challenge, yet we desperately need more and more clinical research to guide our practice. This design is an excellent example of how we can still do research to provide empirical evidence that has been derived from strategies that limit bias and intentionally control for maturation and other confounding factors.
Environmental enrichment as we know is a term that has been used a lot in biology research and in motor learning and skill acquisition research. However, the pure simplicity of using such a term is that we can potentially underestimate the strength and power of it!
Simplicity is always a double edged sword - the beauty of something that is so simple is that it can truly be used by everyone and can be potentially implemented in many contexts. The other side to it is that it is so “simple” that the implementation of it especially when it is done with so much intentionality and specificity (as seen in this study) is overlooked!
Creating an environment that supports learning and exploration cannot be underestimated - from the choice of books available for children to readily access, to the music choices, furniture set up, equipment placement, routines, encouragement, fun, play, friends, positivity and rewarding experiences! They are all “simple” things and if we don't pay attention to why they are there, we can easily overlook them.
I think though that the absence of environmental enrichment is much more obvious. When the environment isn’t enriched, children are not as engaged, they may be unhappy or passive and worse still - they may be crying and visibly upset. These are not things that we want children to experience in any setting or context and we definitely do not want children to experience this during therapy.
So are the environments we create during therapy enriching? Have we supported parents and carers to be aware of the importance of the environment? It is such a great process to check and think through all of the things we are already doing and in turn, identify where we can potentially do more.
This study reinforces why an enriched environment is so important. Not only do children gain important gross motor skills that enable them to be able to explore and have enriched experiences, they also have a physiological response with a 2-3 fold increase in their Brain Derived Neurotrophic Factor (BDNF) protein! Knowing the importance of this protein from a neurological perspective - this provides so much power to the importance of environmental enrichment and specificity.
What we get to do as clinicians is improve outcomes in the people that we get to work with and this provides wonderful evidence to kickstart more research in this incredibly important and clinically relevant area.
Episode 27 (Dr Roslyn Ward)
CLINICAL UTILISATION OF THE INFANT MONITOR OF VOCIAL PRODUCTION (IMP) FOR EARLY IDENTIFICATION OF COMMUNICATION IMPAIRMENT IN YOUNG INFANTS AT-RISK OF CEREBRAL PALSY: A PROSPECTIVE COHORT STUDY.
Reflections on this episode (Lucy Fitzsimons)
An easy-to-read paper with very clinically relevant findings particularly for Speech Pathologists working in early intervention and those working with children with cerebral palsy. After first reading the results of the paper I started immediately reflecting on how and when we usually assess early vocalisations. These results suggest key time points when we should look to assess, and practical ways to do this. Thus, it’s research that can translate and influence clinical practice (what all Clinicians want!).
My first take away message when reading, was how Speech Pathologists can be part of the wider multidisciplinary team supporting the early identification and diagnosis of children with cerebral palsy. Results like the ones reported in this study can provide us with the clinical rationales we need to advocate for reviewing early vocalisations and ensuring we start monitoring a baby’s communication skills as soon as possible. And it was great to hear Ros’s thoughts on this when we spoke to her.
I think other health professionals will also find these results interesting and practically useful. We may all find ourselves listening more intently to a baby’s babbling! As Speech Pathologists (and Health Care Professionals) we know early intervention is crucial, studies like this one reiterate this importance and give us tools to advocate for our role in this population and our role in supporting early communication development.
It was really enjoyable chatting to Ros about the findings of this paper and I’m excited for the future results of the larger study.
Episode 26 (Prof Egmar Longo & Prof Ana Carolina de Campos)
LET'S MAKE PEDIATRIC PHYSICAL THERAPY A TRUE EVIDENCE-BASED FIELD! CAN WE COUNT ON YOU?
Reflections on this episode (Dr Pool)
When I read this article a few years ago, I must say, it really did stimulate my thoughts. It was a true call to action and I could not help but to be part of the answer.
I signed up as a paediatric physiotherapist because I knew how influential the early years would be across the lifespan and I knew that was something I wanted to do. It is a profession that promotes better health and it is a responsibility that cannot be taken lightly.
When I first entered the field, I must say that I did have a particular image in my mind of what a physiotherapist looked like. In my mind, it looked like moving a person’s body - stretching it, having a child practice head control through prone positioning, teaching a child to crawl, sit, walk and stand. I realise now that all of these images are of a physiotherapist working at a body structure and function level. These images were in my mind because that was what I saw when I was training - it was very much a hands on image and therefore by the time I did my NDT training - I started to feel like I was a real physiotherapist because I was doing what I had imagined I might do when I was first thought about being a physiotherapist.
However, as I started to look into the evidence to understand why I was doing certain things, it became increasingly clear that the research had evolved. We now know what the essential active ingredients to making the most of not just a therapy session but the all important paediatric years are guided by the “F-words” and that the active participation of a child in meaningful activities is absolutely vital. The shift from body structure and function to activity and participation was reinforced time and time again in research studies. The lack of the overflow of body structure and function approaches to activity and participation is undeniable. With this in mind, though my NDT training was important to me at the time - it was time to change and it was time to follow the evidence even though it meant a departure from my original thoughts.
I love how Egmar said that our clinical practice is like music - when the rhythm changes, we change with it. If we are committed to providing evidence based therapies, we really should have no problem in changing our tune, our rhythm and style when the evidence changes. Carol’s comments on the vital and essential need for fun is backed by science. Fun is the language of children and adults alike - if we like doing something, we are more likely to engage in it repeatedly. It is simple but it is important. The people we need to ask if something is fun or not isn’t us, but the child! And we all know how brilliantly and sometimes brutally honest children can be - but that is wonderful because it makes it very clear how we need to steer our approaches.
Both Egmar and Carol thought long and hard about how they could impact change in our industry and I love their promotion of “informed choices” for families. Informed choice can only be informed if we, as a scientific community, play our part to objectively and ethically translate what we know the science and research says. Providing therapy treatments that are funded by public money needs to be guided by science - it is the only way to ensure ethical use of limited funds and resources. However, beyond just funding is the context of a family and providing the best level of care is something that we all deserve and desire.
So the final question they pose in their paper - will you be a knowledge broker or active resistor?
Episodes 25 (Dr Melissa Licari)
IMPACT FOR DCD (DEVELOPMENTAL COORDINATION DISORDER)
Reflections on this episode (Dr Pool)
I found this discussion very enlightening and for sure, the results from the paper do bring some past experiences of children I have met over the years that never really fit what I expected in their diagnosis of cerebral palsy.
I must admit, the terminology for DCD has been confusing and since the release of the “International clinical practice recommendations on the definition, diagnosis, assessment, intervention, and psychosocial aspects of developmental coordination disorder” that was initiated by the European Academy of Childhood Disability in 2019, I have begun to understand and appreciate this diagnosis. The global efforts to increase awareness and the formal diagnostic pathways of what is often an “invisible” disability is incredibly important.
Firstly, this Impact for DCD report highlights that there is still no consistent terminology or standardised practice for the diagnosis of DCD in Australia. Similar to children with rare diseases, children with DCD also experience a diagnostic odyssey - taking between 2 and 4 years to receive a diagnosis despite seeking help early. Though it is not recommended that a diagnosis be given until 5 years of age, I think that this highlights even more the importance of awareness in community health professionals.
It is clear that we as allied health professionals are not responsible and should not be responsible for a diagnosis. However, we can identify difficulties in movement and use activity and participation based approaches to help children who may present to us as young as 3 years of age. Activity and participation approaches are crucial, and this means more than ever - meaningful tasks that are contextualised for the child as we know that difficulties in these domains are what will impact inclusion, participation and ultimately the well-being of the child.
Importantly, as community allied health professionals, we need to advocate and facilitate communication with our medical colleagues when the child turns 5 to receive a formal diagnosis. Without this formal recognition, the child’s experience in school will be hampered and in addition to this, funding will not be released and this will significantly impact the services the child requires. We must also ensure that we are careful in our language and labelling. The use of the term “dyspraxia” should only ever be used to describe movement and should never replace a diagnosis.
Episode 24 (Dr Vivienne Travlos)
MENTAL WELLBEING IN NON-AMBULANT YOUTH WITH NEUROMUSCULAR DISORDER: WHAT MAKES THE DIFFERENCE?
Reflections on this episode (Dr Pool)
What a wonderful follow on from our discussion with Gareth Baynam last week. Vivienne’s work is unique in that she really did focus on the well-being of youth with neuromuscular disorders. Their voices and experiences are important and vital if we are to improve care for optimal health and well-being outcomes.
I love that her primary outcome measure was a self-reported mental well-being measure and that this was explored in relation to the ICF framework. It is intriguing that activities i.e. the attainment of skills were not related to mental well-being in this group of youth. Rather, pain and fatigue from a body structure and function perspective was related as well as perceived family support and education. There is so much to draw on with this!
I think that these results highlight the importance of therapy that aims to provide opportunities for movement that we know have a critical effect on pain and fatigue as well as a host of other body structure and function domains. This is not only relevant for the youth in this study but has time and time again been reported in other populations that also rely on wheelchairs for mobility such as cerebral palsy. Movement is critical and breaking up sedentary behaviours needs innovative solutions. Though it seems very much the domain of physiotherapists, it actually requires a multidisciplinary approach from equipment, IT and access. So yes - huge role for us to play here and remaining evidence based must be our approach.
On the flip side - the other aspect that was related to mental well-being was education and family/friend support. I can’t help but to draw on Iona Novak and Andrew Whitehouse’s podcasts where they talk passionately about the grey area of harm. Children and youth need to be educated and they should be with their friends and family. Balancing this with the needs of attending or receiving therapy with multiple appointments is hugely important. We need to be evidence based so that the most optimal outcomes can be achieved with the limited time available to each child and their family. Deviations from this contribute to the ‘therapeutic odyssey’ - excessive interventions for outcomes that may have been achieved by receiving the right interventions without excessive dosage.
Mental well-being of the child and their families are important and vital and as health professionals - we have a role in optimising this. So, provide the right therapy - just enough to make a difference on outcomes that matter to the person and just enough so that there is time to enjoy education, family and friends.
Episodes 22 and 23 (Clinical Professor Gareth Baynam)
DIGIT-ALL: RARE DISEASES
Dr Gareth Baynam is a Clinical Geneticist working in Western Australia with a long-standing commitment to improved Indigenous health care. Dr Baynam works to develop and deliver genetic health care in partnership with Aboriginal health leaders and the community.
Among current activities, Dr Baynam is a practising Clinical Geneticist, a Clinical Genomics Policy Advisor at WA Health, Director of the Undiagnosed Diseases Program, a co-director of genetic and rare diseases research at the Telethon Kids Institute, and a member of the International Scientific Advisory Board of the new pan-European Union genomic and multi-omic initiative for rare diseases (Solve-RD).
Reflections on this episode (Dr Pool)
To be honest, I was pretty blown away by the stats that Gareth Baynam provided in this podcast. It is difficult to comprehend that in Western Australia alone, there are 63,000 children with a diagnosed or undiagnosed rare disease. Of the 63,000 children, only half will receive a diagnosis despite the efforts to diagnose all children.
It is certainly a global health priority and it was very enlightening to parallel this global health priority to the current COVID-19 pandemic. However, even with the COVID-19 situation we find ourselves in, there is still a light at the end of the tunnel with viable vaccination programs now being rolled out, contrasting with many rare diseases that may not have this certainty. The isolation, suffering and uncertainty presents many challenges for individuals with a rare disease and the current global initiatives in place are a great example of collaborative teamwork.
There is much to learn from this area particularly with regards to innovative research approaches when considering rare diseases as well as the advances in digital solutions to improve communication and care around the world.
As a clinician, it is important to understand the unique challenges that are faced with individuals with rare diseases and their families. Though from a therapeutic perspective there may be limited specific evidence based solutions, there is the opportunity to transfer evidence based knowledge from common conditions such as cerebral palsy to children with rare diseases, and the ICF provides a fantastic framework.
I believe that our pursuit to utilise the best available evidence in like populations is even more critical because children with rare diseases and their families have already experienced or are currently experiencing a diagnostic and therapeutic odyssey. This is tremendously burdensome and tiring and our role is not to add to this. We can minimise the impact of the journey for a diagnosis by ensuring that our approaches lean more towards the best available evidence and consequently, are less opinion based.
Episode 21 (Dr Ulrica Jonsson)
CHANGES IN WALKING ABILITY, INTELLECTUAL DISABILITY, AND EPILEPSY IN ADULTS WITH CEREBRAL PALSY OVER 50 YEARS: A POPULATION-BASED FOLLOW-UP STUDY.
Reflections on this episode (Dr Pool)
Papers like this are just so important and much needed in the field. As Ulrica says in the podcast - for so long there just hasn’t been a breadth of research for adults with CP. This is why this paper is so unique as it reports outcomes over 50 years. This data on walking ability, epilepsy and intellectual disability provides a great insight and if you are a paediatric therapist, I believe it is crucial that we have a good understanding of prognostic information. I know that from all these years as a therapist, parents do want to know what the future holds.
The most thought provoking result in this paper was the rate of walking ability decline in adulthood. It is most certainly lower than the reported 52% in Opheim’s paper published in 2009. But a deeper dive does reveal some essential exploration. As Ulrica said, 50 years ago, there was no GMFCS level classification tool yet and so similarly in this article, the authors were consistent with descriptions of ambulation. Evidently, by combining what is essentially people classified within GMFCS levels I and II together as “ambulant,” differences between GMFCS levels I and II are not accounted for.
For me, this highlights that an individual’s mobility may change and may not always be static. This also highlights for me the importance of planning ahead and that supporting a variety of mobility methods is crucial, functional and evidence based. It ensures that skills to use different mobility aids is supported during the growing years and perhaps, preservation of some independent mobility occurs. Losing independent functional mobility as an adult can have some serious consequences that can impact their work, home and community life as not everything, everywhere is accessible (yet!).
Finally, ensuring that children have access to a good GP is reinforced once again. As children transition to adult care, navigating new services poses new challenges and may not look the same as the paediatric co-ordinated, multidisciplinary approach that usually has an 18 year history on their side. GPs need to be able to have the opportunity to stay in the loop so that reviews in medications can be initiated and care plans can be revised. For 46% of individuals becoming seizure free without medication by adulthood indicates once again that presentations may change overtime.
This paper doesn’t enable us to know the individual features that lead to these changes but it does give us the reminder that care plans and medications can change.
Episode 20 (Mitch Adams)
RESEARCH IN ACTION - THE TEAM BASED APPROACH. HOW RESEARCH OPERATIONS MANAGERS AND PROJECT MANAGERS CAN ENHANCE AND IMPROVE RESEARCH PROJECTS
Reflections on this episode (Dr Pool)
A special episode with Kids Rehab's own Research Operations Manager.
Today we highlight the team based approach to modern research - with a focus on project management and tales of research endeavours. With pearls of wisdom that highlight what to look for in making research happen smoothly (and to learn from the missteps that can cause hiccups).
As part of the Kids Rehab team at Telethon Kids Institute and Perth Children's Hospital, Mitch provides operational support to the research team including financial, data, and program management. It was a pleasure to speak with Mitch about projects past and present and how a Project/Operations Manager can assist with and enhance your research project.
Mitch has a Bachelor of Laws from Australian National University (Canberra) and a Master of Science in Economics from Gothenburg University (Sweden). Prior to joining Kids Rehab, Mitch was a manager for Social Ventures Australia's consulting team, where he advised for-purpose organisations around Australia on using strategy and evaluation to improve social impact. Before that, Mitch was a senior program manager for international development assistance programs in South East Asia and the Pacific.
With a wealth of knowledge and expertise in project and operations management, the role Mitch plays in making "research work" is a vital one. Listening to this episode could very well highlight some logistical operational needs and requirements that you may not have thought of previously and this insight can only help to make your research project a smoother experience for you and your team.
We hope you enjoy a behind the scenes look at what makes Research Work!
Ausacpdm award winners!
At the recent AusACPDM 2024 Conference, Dr Pool and Dr Thornton were awarded the prestigious Australasian Academy of Cerebral Palsy and Developmental Medicine (AusACDPM) Transformative Practice Award!