MOVING TOGETHER IS BETTER: A SYSTEMATIC REVIEW WITH META-ANALYSIS OF SPORTS-FOCUSED INTERVENTIONS AIMING TO IMPROVE PHYSICAL ACTIVITY PARTICIPATION IN CHILDREN AND ADOLESCENTS WITH CEREBRAL PALSY
Reflections on this episode (Dr Pool)
The aim of this paper was to analyse the effectiveness of sports-focused interventions on the participation of children and adolescents with cerebral palsy. In this systematic review with meta analysis, articles were included if they were RCTs that investigated the effectiveness of any sports-focused intervention in children and young adults 5-24 years old with CP compared with any control or comparison. Outcomes had to include participation attendance or involvement assessed by standardised measures or individual goal focused measures.
The findings of this review suggest there is moderate evidence regarding the effectiveness of sports focused interventions on leisure time physical activity participation in children and adolescents with CP. Group interventions are effective in improving leisure time physical activity participation and sports-focused interventions didn’t improve participation in other life areas.
The outcome of this review provides valuable information for clinicians to promote appropriate rehabilitation programs for children and adolescents with sports and recreation goals.
I love this paper because the message is really simple! We know that participation is influenced by multiple components so our interventions therefore also need to incorporate as many of these components as possible. Interventions that aim to improve leisure time physical activity participation - that is for a person to decide to engage in a physical activity out of choice, requires the merging of as many active ingredients in different domains as possible.
This is such an important link with the bigger picture - what can we do in our sessions that can have the most impact on how a child lives their life outside of therapy? If we can appreciate and integrate the social, cognitive and psychological ingredients within the desired context - we can go a long way in improving leisure time physical activity.
Once again, task specificity is key - what is it that the child wants and what can we do to help to foster an interest for the child to engage in more leisure time physical activity? These questions not only shape our planning for sessions now but also can help us with goal setting and forward projecting for each child as they engage in therapeutic services.
EARLY INTERVENTION FOR CHILDREN AGED 0 TO 2 YEARS WITH OR AT HIGH RISK OF CEREBRAL PALSY: INTERNATIONAL CLINICAL PRACTICE GUIDELINE BASED ON SYSTEMATIC REVIEWS
Reflections on this episode (Dr Pool)
The aim of this systematic review was to evaluate the best available evidence about early interventions for cerebral palsy across 9 domains that promote motor function, cognitive skills, communication, eating and drinking, vision, sleep, managing muscle tone, musculoskeletal health and parental support.
The literature was searched for the best available evidence for intervention for children aged between 0 and 2 years at high risk or with cerebral palsy.
Systematic reviews and RCTs were appraised by A Measurement Tool to Assess Systematic Reviews (AMSTAR) or Cochrane Risk of Bias Tools with recommendations being formed using the Grading of Recommendations Assessment, Development and Evaluation (or GRADE) framework and reported according to the Appraisal of Guidelines, Research and Evaluation instrument.
This systematic review summarises 3 best practice principles with 28 recommendations specific to the 9 domains and concludes that when a child meets the criteria of high risk CP, intervention should start as soon as possible to build on a critical development time for plasticity of developing systems.
I would really encourage everyone to have a look at the paper - it is brilliant. The tables present the breadth of the information wonderfully and are a useful tool to have when talking to families. The input into this paper was tremendous and you only have to look at the list of authors from all over the world and clinical expertise as well as the rigorous literature review to be confident that this is truly the current state of the evidence.
When there is evidence, as health professionals it is our obligation to follow it. The unique thing about this paper is that the authors searched for the highest level of evidence. If there was no evidence in an area, then the wider literature in child health was reviewed. I often hear that if there is no research in an area than relying just on anecdotal reports and clinical expertise is sufficient. Indeed there are areas where there is limited evidence and this review addresses that by looking for the best evidence by either moving down the hierarchy of evidence or to the wider literature.
However, it is also important to note that there is now enough research that has been done where we can say there is strong evidence for and against interventions, particularly with regards to motor interventions. Cathy says it beautifully in that sometimes the effect sizes are small or are cumulative over time. Therefore, there are missed opportunities if we engage in something that doesn’t have the evidence to support it, particularly during such a peak period of neuroplasticity.
Task specificity was also discussed at length today and though it is seemingly very obvious in what it means, it is still worth having a critical analysis of our practice. Is it truly task specific? The child is only going to learn in the context and in the position that they practice and it is this active engagement that is self generated that makes the difference - not just from a motor perspective but also from a cognitive perspective.
Environmental enrichment brings it all together and this also means that how the child learns makes a difference. We’ve spoken about this before, particularly with regards to our response from the DMI comments in our posts a few weeks ago. A child learning in distress is not conducive to neuroplasticity and the weight of the evidence supports this.
A MID-SEASON RECAP
Can you believe we are already halfway through season 2?
In this week’s episode, we endeavoured to bring everything together from all of the wonderful interviews so far in 2022. We identified 3 main themes which, as Ed pointed out - really does bring together the 3 components of evidence based practice (go Ed - we were impressed!). When you combine the power of co-design (which represents the patient or consumer values and priorities), along with our clinical expertise (which was really highlighted through the assessments and classifications we covered that really do rely on our clinical skills, observations and experience) and the best practice principles - we have evidence based practice!
1. The power of co-design!!
We started this theme with our first episode where we discussed our own qualitative study. We learnt that if you involve consumers in the design of interventions, it ensures sustainability beyond research. This was emphasised by our chats with Laura Miller - (ENVISAGE), Helen Bourke-Taylor (HMFM), Hayley Passmore (REFRAME) and Ellen Armstrong (FES) on how to incorporate the consumer voice in program delivery. Nadine Smith described how to involve consumers in addressing important clinical issues such as pain and the result of designing an intervention that addressed this clinical need that was also suitable for the families. Nadine demonstrated that adopting a single subject research design was a nice way to evaluate this approach. This also extended to assessment tools and how we can make them work best for the people who need the information (Paula Chagas). Paula’s work in developing the GMF-FR is an excellent example of this and I’m sure we are all very excited for this assessment tool to be validated and made available.
2. The importance of measurement, and understanding WHAT you’re measuring and WHY
Paula spent some time helping us to review the definitions of performance, capacity and capability. Understanding the difference between these definitions is so important when we want to consider the purpose of our assessments. This highlighted that the GMF-FR measures performance (usual function) rather than capacity which is important especially in the current age of telehealth appointments. Simon Garbellini brought some great content about the importance of classification tools and their place in clinical practice where assessment and classification tools tell us about the contributing factors to function and provide possibilities for intervention pathways. Magnus Pahlman talked about the MRI classification tool and how MRI or neuroimaging findings can affect early interventions especially in the realm of ASD and ADHD in children with CP. Finally, Corrin helped us to understand how to develop an evidence base for new assessment tools as they come to light, and all the trials and tribulations along the way!
3. We were constantly reminded of best practice principles to improve function in cerebral palsy.
What we discussed back in Season 1 (international clinical practice guideline with Michelle Jackman) was constantly reinforced in a number of clinical trials and systematic reviews in season 2. The value of goal setting and practicing the whole goal in real life (Georgina Clutterbuck, Leanne Sakzewski and Sarah Reedman) whilst working together as part of a team, with clinicians sharing their knowledge about evidence based interventions (Anna te Velde) were frequently discussed themes.
Our discussion with Taylor Penny reinforced the value of clinicians sharing their knowledge and how it is important for clinicians to be aware of progress in the wider scientific field to point families in the direction of appropriate information. Mark Peterson left us an Easter egg about the development of clinical guidelines for adults with cerebral palsy. The importance of such a guideline was highlighted in our discussion with Mark as he discussed the challenges in the transition from childhood to adulthood for families and people with disabilities. Mark emphasised that there should be a focus on mental as well as physical health early and that we need to do more early and often to support a strong sense of self in children, which will enable them to advocate for themselves as they get older.
To pull all the threads together, it really does come down to how we use this information as health professionals and central to this is our communication skills or ‘soft skills’. Ben Jackson’s episode provides an overarching guide on how to effectively communicate information with families and other clinicians. Ben discussed some key features that would affect our communication including goal setting (expectation effect), two sided messaging and the inoculation theory, understanding the weapons of influence, being aware of trait responses, harnessing the power of people and being an expert by knowing the evidence.
We hope this helps to bring it all together!
We will be back in September for more interviews, ice-breakers and take home messages with Ed’s increasingly insightful questions.
Thanks for joining us so far!
An enlightening look at research in Australia. From RCTs to HABIT-ILE, the NHMRC, Active Strides-CP, evidence based practices, the truth about neuroplasticity and so much more!
Reflections on this episode (Dr Pool)
It is not everyday that you get to have a sit down conversation with some of the most influential and leading clinical interventionists. In this conversation, it really struck me that it isn’t easy being a clinical researcher - it is the balance of pragmatism and pure scientific rigour. In this week’s episode of the pod, we got into some detail about what it takes to develop high level evidence. It is a labour of love that’s for sure and often years in the making.
It is so important that we do not dismiss the value of high level evidence and distinguish it from low levels of evidence. The process, the critique, the wins and failures all go into developing something that can give the children we work with, to have the best chance of optimal outcomes. Yes, that is very science speak but optimal outcomes ultimately better quality of life, better health, better opportunities, a brighter future and a guided pathway on what next. This is ultimately, what parents want for their children right?
I often hear the critique about randomised controlled trials or RCTs and that anecdotal evidence is sufficient in clinical practice. That is simply incorrect and tremendously misleading. Anecdotal evidence is easily collected in everyday practice. It is important to listen to families and value what is seen, felt and heard. The question though is what does that moment of a seemingly good intervention mean in the long term? Does it actually change outcomes or was it transient and just in the moment? Is it the best course of action or is there something better we could be spending our money and time with? What are the side effects? Could this cause harm if I apply it someone else?
These questions are not designed to be personal - it is important that as health professionals that we take the responsibility of being able to answer these questions. Anecdotal evidence only starts the conversation and if RCTs are critiqued for applicability beyond the sample being studied, I would argue that anecdotal evidence does exactly the same, except this time, it is in one patient and just one person at a time. There is no way of knowing if personal circumstances, individual presentations, time of day, financial conflicts, personal biases or phase of natural maturation are in effect.
For our field to move forward isn’t just a claim for career progression. It is to get to the nuts and bolts of what actually works. We expect this for medications that we take. Take for example, the COVID-19 booster shots. If I were to take the shot every 6 months, does it actually make a difference in severity of disease? I don’t think there is an appetite to take endless doses unless we know there is an effect. If I’m going to make this decision, I want to know that there are high quality studies involved and that they are not subject to the bias of a few and financial interests of those companies. The same thing applies to therapy so there is great value in teasing it out and aiming for as high quality evidence as we can.
I hope you enjoy this two part series - a conversation with some very passionate, very knowledgable and experienced people in our field!
NEUROIMAGING FINDINGS IN CHILDREN WITH CEREBRAL PALSY WITH AUTISM AND/OR ATTENTION-DEFICIT/HYPERACTIVITY DISORDER: A POPULATION-BASED STUDY
Reflections on this episode (Dr Pool)
Given the co-occurrence of ASD, ADHD and ID in children with CP, the authors of this paper aimed to describe and compare neuroimaging patterns in a population based group of children with CP in relation to the presences of ASD, ADHD and relate these findings to gestational age, CP type and ID.
Neuroimaging was reviewed in children with CP who had completed neuroimaging as well as having completed a comprehensive screening and clinical assessment for ASD and ADHD. So included in the study were 184 children, which represented 70% of the total population of children with CP and 92% of the children that were also assessed for ASD and ADHD that were born between 1999 and 2006 from the well-established CP register in Western Sweden.
The results indicated that although ASD and ADHD were common regardless of neuroimaging patterns, the timing and localisation of insult appear to be of importance for the occurrence of ASD and ADHD. ASD was more often associated with white matter injury and ADHD with middle cerebral artery infarction.
This is such a wonderful follow up from Magnus’ first paper. It is the link between aetiology and presentation and will certainly go a long way in helping me to formulate my intervention strategies very early in to give children the best opportunity to be supported in their development.
A QUALITATIVE ANALYSIS OF THE EXPERIENCES OF CHILDREN WITH CEREBRAL PALSY AND THEIR CAREGIVERS IN A GOAL-DIRECTED CYCLING PROGRAMME
Reflections on this episode (Dr Pool)
I have to say, I absolutely love functional electrical stimulation (FES). It is no secret that I think there is a lot of potential when it comes to FES. However, we have really needed more research to help us as clinicians understand what it is doing and how it can actually help.
FES involves equipment, electrodes, an in depth understanding of parameters - parameters not just for tolerance but also for facilitating neuroplasticity. So there are certainly a number of barriers. Is it worth it? In a population of children with CP, GMFCS levels II to IV - this study found that there was an improvement in goal attainment as well as functional strength gains in the group of children that received the FES cycle intervention.
It is interesting that improvements were noted more broadly - transfers, running, walking, toileting and stairs. Why is this the case? It makes sense that cycling itself would have improved - it is afterall, task specific. I think this highlights the value of FES. FES cycling is very much an important aspect of eliciting cardiovascular responses in people with spinal cord injuries. FES enables and facilitates more efficient recruitment of intact motor units in the lower limb. These coordinated muscle contractions of all the major muscle groups in the lower limb is what increases work output - a sub-maximal muscle contraction for nearly 30 minutes is a workout for anyone and FES is the vehicle that enables this.
Transfer this concept to children with CP and there is the hope that we are also getting these muscle contractions that the child would not get otherwise. Cycling - and in particular FES cycling - really focuses on the push element on the crank - active extension of the hip, knee and plantarflexion of the ankle. Strengthening in these ranges is vital and we know that muscle strengthening with a focus on both strength and power has functional ramifications - especially when the task is also practiced.
This paper provides some key features of what needs to be considered when applying FES. From application of the electrodes (yes they are very cold to start with!), removal of electrodes, frequency settings (hover around 40 to 50hz for optimal comfort whilst balancing fatigue), goal setting, scheduling sessions to therapist-child rapport. These components are all part of enabling FES to be applied in children with CP. So we should always take the results from quantitative studies alongside the qualitative reports if we are to generalise and apply research findings in our practice.
EFFECT OF TARGETED MOVEMENT INTERVENTIONS ON PAIN AND QUALITY OF LIFE IN CHILDREN WITH DYSKINETIC CEREBRAL PALSY: A PILOT SINGLE SUBJECT RESEARCH DESIGN TO TEST FEASIBILITY OF PARENT-REPORTED ASSESSMENTS.
Reflections on this episode (Dr Pool)
I love Nadine’s passion and this paper really does demonstrate this. Pain is such a significant issue for children with cerebral palsy. For children with dyskinetic CP, GMFCS levels V and MACS V, the functional mobility impairments can play a significant role in contributing to pain. Apart from tertiary medical interventions which can range from oral medications to more invasive procedures such as intrathecal baclofen pumps, the evidence for physiotherapy and occupational therapy is scarce.
We know that movement can reduce pain, and for children that lock into end range positions because of dystonic posturing, it actually does make so much sense to support movement and midline positions that prevent painful “stuck” postures.
There are a few unique things about this paper. Firstly, the intervention was delivered just once a week. It is understandable that families find intensive treatments less feasible. When selecting dosages, we need to consider goals. Much of the work in intensive therapy programs are around functional motor goals. It is important to realsSe that the evidence for effective motor skill acquisition calls for active, self generated movement that is based on function thereby requiring a minimum of 30 hours delivered over a defined period of time. However, if we are considering the goal for children with dyskinetic CP, GMFCS level V, which may be - “LESS PAIN”, well the intensity needs to be reflective of this.
The weekly appointments as Nadine described was such a joint effort between therapists and families. There were conversations that fostered problem solving and a true collaboration of family input and therapist expertise. This in itself, lends itself to increased engagement with families and carry over into everyday activities. This is an appropriate level of intensity because the goals are around individualised care and comfort.
I also love that the researchers adopted a single subject research design. For this population, where there is a huge range of heterogeneity largely attributed to co-morbidities, single subject research designs also known as Single Case Experimental Designs is very appropriate. An intensive study of each individual with prospective data collection, control and data analysis contrasts this approach from case studies which have the lowest level of evidence. This is a great start to building evidence in the area.
Nadine kept saying this is a paper for all the clinicians out there. I can see why and hopefully this inspires more therapists to know that applying some of these research techniques is possible in clinical practice to provide very meaningful information to guide our practice and improve care.
NEURODEVELOPMENTAL THERAPY FOR CEREBRAL PALSY: A META-ANALYSIS
Reflections on this episode (Dr Pool)
This is just such a vital piece of work. The collective efforts of clinicians and researchers over the last few decades brings us to this point where we can now say with confidence that implementation of neurodevelopmental therapy of NDT (i.e., Bobath) in cerebral palsy is required.
Of the 667 records screened, 34 studies, in 35 publications comprising 1332 participants met the inclusion criteria in this metaanalysis of randomised controlled trials comparing NDT with any or no intervention. Quality was then assessed using the Cochrane Risk of Bias tool and certainty using the GRADE or Grading of Recommendations Assessment, Development and Evaluation. After reviewing a number of conditions, the study found that activity based and body structure and function interventions were more effective than control and higher dose NDT is not more effective than lower dose.
It is important to also understand that whilst this work focused on NDT, it is the features of NDT that make it less effective in the acquisition of motor skills. There are a host of other therapy approaches that have not been studied but share similarities to NDT. It is important that therapists and families are aware of these contrasting features to understand what is effective and why they are effective.
The key elements of NDT and other bottom up approaches that can be identified that make it contrast so much with the top down approaches include:
Facilitation and handling - therapist initiated movement that causes the child to react and respond. This is not active movement and is not child generated which is vital in activity dependent plasticity.
Positioning to normalize movement - this includes language around how to make a child look more ‘normal’ i.e., words used around ‘straight body’, ‘sitting up properly’ and working to improve ‘alignment’ in a child with cerebral palsy.
Aims to minimize atypical motor behaviour or movement. A focus on influence tone or integrating reflexes. Passive stretching and massage. Sensory support in an effort to modulate movement and Vestibular input in an effort to modulate or once again normalise movement.
There are now more effective alternatives that enable activity dependent plasticity. These top down approaches include: Learning through active self-generated movement Progressive i.e., the “just right challenge” Repetitive and therefore fun! Varied specific task practice Performance feedback Real life, meaningful goals Child problem solving. What a great conversation and article that all paediatric therapists should be aware of because of the tremendous influence this will have on our practice as well as in policies around deimplementing NDT and other similar approaches.
DEVELOPMENT OF THE GROSS MOTOR FUNCTION FAMILY REPORT (GMF-FR) FOR CHILDREN WITH CEREBRAL PALSY
Reflections on this episode (Dr Pool)
This is such an exciting piece of work that will really help clinicians and families in conducting valid and reliable assessments. So many of our assessments are conducted within clinics to measure a child's capacity - that is their ability to be able to perform an activity within a clinical and standardised setting. However, increasingly we understand that this will contrast with a child's performance, that is how a child is able to perform their everyday activities within their home context, a real reflection of everyday life.
The Gross Motor Function Measure is a well-known clinical assessment. It does, however, take between 30 and 40 minutes to complete - even with an experienced therapist. Whilst it is vital that we conduct assessments to guide and evaluate our treatments, spending 30 to 40 minutes on this can be a limitation and a barrier. So clearly in some situations it is important that we have alternatives and the COVID-19 pandemic really has pushed researchers to developing something that could be used in these circumstances.
The GMFFR is something that we need to keeping our eye on and as Paula mentioned today in the podcast the validation process is underway and hopefully by the end of this year we will be able to have a valid and reliable assessment that can be used by families to measure gross motor function performance. The fact that it can take anywhere between 5 and 15 minutes is so important. With 28 items having been selected representing all of the domains of the GMFM, it appears the GMFFR will give us a good indication of a child's gross motor function if they have cerebral palsy and are aged between 2 and 18 years.
I'm very hopeful that with an assessment like this that it can also serve as a great screening tool. It can also be used beyond this pandemic, when children are unable to attend clinic. The other very exciting thing about this for me is that it isn't completely reliant on a physiotherapist needing to conduct the assessment. We know that in some settings, all the resources may not be as available and this team has thought about this because they wanted to develop an assessment for use in low-income countries. Therefore, the ability to be able to draw on the expertise and support of colleagues as well as being able to work in a very interdisciplinary way is supported by the development of the GMFFR.
We can't wait to see this assessment and use it in our clinic. Thank you to this wonderful team - a great collaboration between the two exceptional research teams in Brazil and Canada.
The ResearchWorks Podcast
Recorded on site at the Healthy Strides Foundation, East Victoria Park, WA 6101, Australia
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Season 4 of the pod begins again this weekend - from March 3rd, 2024!
Some of our illustrious guests for this season include:
Professor Catherine Elliott, Professor Iona Novak, Sue-Anne Davidson, Dr Jacqui Barfoot, Dr Alexandra Sullivan, Associate Professor Alexander Larcombe, Assistant Professor Giovanni Di Liberto, Dr Elena Mitteregger and so many more!