Early Detection and Early Intervention - where are we now (and what does the future hold)?

The last time we had Alicia on the pod, we spoke about the Cochrane Review she led titled “Early developmental intervention programmes provided post hospital discharge to prevent motor and cognitive impairment in preterm infants” which was published in 2024. In this week’s episode, we thought we’d ask Alicia about the state of early intervention right now and what the provision of therapy looks like within our current context of early detection and early intervention for children with cerebral palsy.

There have been some rather significant developments in the early detection and early intervention space over the past 20 years. From the rapid technological advances to the value of co-design and involvement of people with lived experience, we now have some impressive evidence to guide our clinical pathways. However, what is very clear now is the vital importance of implementation. The industry has generated substantial knowledge that now needs to be implemented into practice with one particularly important aspect that we must include - family involvement and well-being. 

Alicia speaks ever so passionately about our role as therapists and I cannot help but to feel even more compelled to ensure that the family is at the centre of everything we do. It is exciting to know that we have the evidence now, so it’s time to put it into practice and it can start in your very next session.

https://findanexpert.unimelb.edu.au/profile/27041-alicia-spittle

Implementing Clinical Practice Guidelines for Improving Function in Cerebral Palsy: Development of a Fidelity Tool

In this study, the research team developed a 21-item fidelity tool to help clinicians implement evidence-based guidelines for improving function in children with cerebral palsy. Designed for goal setting, intervention, and reflection, the tool was found to be practical and useful but faced challenges like time constraints and family expectations. The study highlights the need for education, self-reflection, and organisational support to bridge the gap between research and practice.

Abstract
Purpose: To develop a fidelity tool to support the implementation of clinical practice guidelines to improve physical function for children and young people with cerebral palsy.

Methods: Fidelity tool development followed a 5-step process: the pilot study, using a mixed-methods action research approach, and including focus groups, questionnaires, and field notes.

Results: A 21-item fidelity tool representing the core components of the clinical practice guidelines was developed, including subsections of goal setting, intervention, and elements seen throughout therapeutic intervention. Clinicians and supervisors reported this tool as acceptable and feasible, especially when used as a self-reflection tool.

Conclusions: A fidelity tool has been developed that clinicians, supervisors and organizations can use to reflect on current practice and plan for changes to align practice with guidelines to improve function in children with cerebral palsy.

https://pubmed.ncbi.nlm.nih.gov/39378353/

Professor Nick Gottardo walks us through medulloblastomas - a comprehensive master class for clinicians and researchers.  Expect to learn about early signs and symptoms, diagnosis, treatment and prognosis. Dr Nick breaks this down beautifully.

What was really clear throughout our discussion was that collaboration is key. Given the incidence of medulloblastomas and the specific subtypes that fall within this category, it would not be possible to develop effective treatments that minimise detrimental side effects without coming together with centres across the world.

This episode is truly special so if you want to know the current state of the evidence when it comes to treating medulloblastomas - this is a must listen episode.

All about knowledge translation

A special episode with our illustrious hosts before we catch up with Professor Nick Gottardo, Professor Alicia Spittle, Professor Andrew Whitehouse, Dr Gareth Baynam, Assoc. Professor Nikki Milne and Assoc. Clinical Professor Anita Gross amongst many others!

Randomized Comparison Trial of Rehabilitation Very Early for Infants with Congenital Hemiplegia

Roslyn N Boyd, Susan Greaves, Jenny Ziviani, Iona Novak, Nadia Badawi, Kerstin Pannek, Catherine Elliott, Margaret Wallen, Catherine Morgan, Jane Valentine, Lisa Findlay, Andrea Guzzetta, Koa Whittingham, Robert S Ware, Simona Fiori, Nathalie L Maitre, Jill Heathcock, Kimberley Scott, Ann-Christin Eliasson, Leanne Sakzewski

PMID: 39477009 DOI: 10.1016/j.jpeds.2024.114381

Free article

Abstract
Objective: To compare efficacy of constraint-induced movement therapy (Baby-CIMT) with bimanual therapy (Baby-BIM) in infants at high risk of unilateral cerebral palsy.

Study design: This was a single-blind, randomized-comparison-trial that had the following inclusion criteria: (1) asymmetric brain lesion (2) absent fidgety General Movements, (3) Hammersmith Infant Neurological Examination below cerebral palsy cut-points, (4) entry at 3-9 months of corrected age, and (5) greater than 3-point difference between hands on Hand Assessment Infants (HAI). Infants were randomized to Baby-CIMT or Baby-BIM, which comprised 6-9 months of home-based intervention. Daily dose varied from 20 to 40 minutes according to age (total 70-89.2 hours). Primary outcome measure was the HAI after intervention, with secondary outcomes Mini-Assisting Hand Assessment and Bayley III cognition at 24 months of corrected age.

Results: In total, 96 infants (51 male, 52 right hemiplegia) born median at 37-weeks of gestation were randomized to Baby-CIMT (n = 46) or Baby-BIM (n = 50) and commenced intervention at a mean 6.5 (SD 1.6) months corrected age. There were no between group differences immediately after intervention on HAI (mean difference MD 0.98 HAI units, 95% CI 0.94-2.91; P = .31). Both groups demonstrated significant clinically important improvements from baseline to after intervention (Baby-BIM MD 3.48, 95% CI 2.09-4.87; Baby-CIMT MD 4.42, 95% CI 3.07-5.77). At 24 months, 64 infants were diagnosed with unilateral cerebral palsy (35 Baby-CIMT, 29 Baby-BIM). Infants who entered the study between 3 and 6 months of corrected age had greater change in HAI Both Hands Sum Score compared with those who entered at ≥6 months of corrected age (MD 7.17, 95% CI 2.93-11.41, P = .001).

Conclusions: Baby-CIMT was not superior to Baby-BIM, and both interventions improved hand development. Infants commencing intervention at greater than 6 months corrected age had greater improvements in hand function.

https://pubmed.ncbi.nlm.nih.gov/39477009/

Upper Limb Therapy for Infants and Young Children with Unilateral Cerebral Palsy: A Clinical Framework

Susan Greaves, Brian Hoare

PMID: 39598017 PMCID: PMC11594546 DOI: 10.3390/jcm13226873

Abstract

Early detection and rehabilitation interventions are essential to optimise motor function in infants and young children with unilateral cerebral palsy. In this paper we report a clinical framework aimed at enhancing upper limb therapy for infants and young children with unilateral cerebral palsy during a sensitive period of brain development. 

We describe two major therapeutic approaches based on motor learning principles and evidence: constraint-induced movement therapy and bimanual therapy. These two therapies have demonstrated efficacy in older children and emerging evidence is available for their application to infants younger than 2 years of age. To provide clinicians with guidance as to when to implement these therapies, we discuss the key consideration when undertaking upper limb therapy programs. In addition, we describe the factors to consider when choosing which approach may be suitable for an individual child and family. Detailed strategies for implementing these therapies in infants and young children of different ability levels are given.

Keywords: bimanual therapy; constraint-induced movement therapy; early intervention; unilateral cerebral palsy; upper limb.

https://pubmed.ncbi.nlm.nih.gov/39598017/

Experiences of participation in daily life of adolescents and young adults with cerebral palsy: A scoping review

Stacey L Cleary, Prue E Morgan, Margaret Wallen, Ingrid Honan, Nora Shields, Freya E Munzel, James R Plummer, Cassandra Assaad, Petra Karlsson, Evelyn Culnane, Jacqueline Y Ding, Carlee Holmes, Iain M Dutia, Dinah S Reddihough, Christine Imms

• PMID: 39673293
• DOI: 10.1111/dmcn.16196

Abstract

Aim: To synthesize the experiences of 15- to 34-year-olds with cerebral palsy (CP) as they participate in key life situations of young adulthood.

Method: A mixed-methods scoping review was undertaken and six electronic databases searched (January 2001 to August 2023). Participation foci and thematic outcomes were mapped to the International Classification of Functioning, Disability and Health. Results were integrated using a convergent integrated analysis framework, and data analysis completed through thematic synthesis. Themes were mapped to the family of Participation-Related Constructs.

Results: Thirty-eight publications (32 studies; 2759 participants) were included. More participants were male (n = 1435), walked independently (n = 1319), and lived with their families (n = 1171). 'Claiming my adulthood and "doing" life' was the unifying descriptor of participation, conveying the effortful work young people felt necessary to take their places in the adult world. The physical accessibility of the environment was a significant barrier to participation, as were people's negative attitudes or misconceptions about disability. A close-knit 'circle of support', typically family members, formed a supportive foundation during this period.

Interpretation: Young people with CP aim to participate fully in adult life, alongside their peers. Improved community accessibility, inclusion, and more supportive health environments would ensure they could live the lives they choose.

https://www.mycpguide.org.au/

https://upmovement.org.uk/

To round off 2024 and as an extra special lead-in to a stellar 2025 ahead, we have a holiday special - all about the EACD & IAACD 2025 Conference to be held in Heidelberg Germany! 🇩🇪

It's going to be a very unique conference this year as a combined EACD/IAACD event - so join with Dr Sebastian Schroeder and Dr Rainer Blank as they speak with our very own Dr Dayna Pool!

From a behind the scenes look, to what you can expect from the conference this year, the pre-conference sessions at the breathtaking UNESCO Monastery Maulbronn (FREE shuttles included in the conference registration!), be sure to join us for a brilliant conversation with some of Germany's very finest!

Also - are you curious about what a German Christmas looked like? Or what handy german phrases you should be working on before arriving, we've got you covered! 😉

You'll find the audiocast on all good podcast platforms and there's also the videocast on our YouTube channel, if you'd like to put a face to the voice!

youtube.com/@researchworkspodcast

researchworks.net

The ResearchWorks crew will be back again in early 2025 for Season 5 of the pod, with more long form interviews with incredible researchers from across the globe!

incredible!

The team at the ResearchWorks Podcast are celebrating 200 episodes! With over 4 seasons, invited collaborators with the EACD - European Academy of Childhood-onset Disabilities Conference and the AusACPDM - the Australasian Academy of Cerebral Palsy and Developmental Medicine and Transformative Practice Award Winners for 2024, it has been a stellar journey. 🚀

Join us for a brilliant wrap up for Season 4 - we have some special standalone episodes coming and in 2025, we'll be back on tour again, this time supporting the incredible 2025 EACD/IAACD conference in Heidelberg Germany - so we'll see you there! 🇩🇪✈️

2025 will also see a very very special announcement, taking ResearchWorks beyond the podcast platform and further supporting clinicians and researchers to be empowered and up skilled across the globe! We're very excited for the future! 

We'll talk with you all soon! 

An incredible episode with Director of Research - Professor Ben Jackson from The Kids Research Institute Australia - a masterful lesson in communication skills.

Our role as clinicians involves a whole lot of communication and there are evidence based approaches for how we communicate. This is so important because whilst communication skills are often referred to as 'soft skills', they are the key to understanding people. 

In this week's episode, expect to learn about the role of the Self Determination Theory in motivational regulation, how motivational interviewing can move us along the continuum from from have to, to want to, to love to, if SMART goals the only way to set goals. how to bring people along the journey through some key negotiation skills and why the word "yet" is so powerful.

Motor optimality score-revised (mos-r) and hammersmith infant neurological examination (hine) predict high likelihood of autism at 12 months corrected age in a developmentally vulnerable infant cohort.

Dr Carly Luke is a Physiotherapist and Postdoctoral Research Fellow with the Queensland Cerebral Palsy and Rehabilitation Research Centre, the University of Queensland. Her work across clinical and research settings is focused on delivering care to infants with an increased likelihood of cerebral palsy and other adverse neurodevelopmental and neurodiverse outcomes.

She has a strong interest in training and capacity building and has supported the implementation of the CP early detection guidelines across QLD and in low-resource countries as a HINE trainer.  Ms Luke has demonstrated leadership in advocating for change to the model of care and neonatal follow-up for 'high risk' infants in North QLD and continues to support pathways across the state. Her PhD and postdoctoral studies focus on implementing early screening programs for developmentally vulnerable infants across First Nations, regional rural and remote contexts.

The power of Para sport: the effect of performance-focused swimming training on motor function in adolescents with cerebral palsy and high support needs (GMFCS IV) - a single-case experimental design with 30-month follow-up.

Abstract

Objective: This study aims to evaluate the effect of a performance-focused swimming programme on motor function in previously untrained adolescents with cerebral palsy and high support needs (CPHSN) and to determine whether the motor decline typical of adolescents with CPHSN occurred in these swimmers.

Methods: A Multiple-Baseline, Single-Case Experimental Design (MB-SCED) study comprising five phases and a 30-month follow-up was conducted. Participants were two males and one female, all aged 15 years, untrained and with CPHSN. The intervention was a 46-month swimming training programme, focused exclusively on improving performance. Outcomes were swim performance (velocity); training load (rating of perceived exertion min/week; swim distance/week) and Gross Motor Function Measure-66-Item Set (GMFM-66). MB-SCED data were analysed using interrupted time-series simulation analysis. Motor function over 46 months was modelled (generalised additive model) using GMFM-66 scores and compared with a model of predicted motor decline.

Results: Improvements in GMFM-66 scores in response to training were significant (p<0.001), and two periods of training withdrawal each resulted in significant motor decline (p≤0.001). Participant motor function remained above baseline levels for the study duration, and, importantly, participants did not experience the motor decline typical of other adolescents with CPHSN. Weekly training volumes were also commensurate with WHO recommended physical activity levels.

Conclusions: Results suggest that adolescents with CPHSN who meet physical activity guidelines through participation in competitive swimming may prevent motor decline. However, this population is clinically complex, and in order to permit safe, effective participation in competitive sport, priority should be placed on the development of programmes delivered by skilled multiprofessional teams.

Effectiveness of postural interventions in cerebral palsy: umbrella systematic review.

Monica Toohey , Remy Blatch-Williams , Kristian Budini , Astrid Ferreira , Alexandra Griffin , Ashleigh Hines , Michelle Jackman , Karin Lind , Jill Massey , Maria Mc Namara , Jenna Mitchell , Catherine Morgan , Esther Norfolk , Madison CB. Paton , Daniel Polyblank , Sarah Reedman , Iona Novak


Discussion

The objective of this umbrella systematic review was to summarize and evaluate the evidence for postural management interventions in cerebral palsy published since Gough's 2009 paper. We have expanded the scope of the review from passive continuous postural management to include active postural control interventions. Many interventions show positive effects on postural outcomes including range of motion, spasticity, pain, hip migration, gross motor function, hand function, gait parameters,

Conclusion

In conclusion, our umbrella systematic review evaluated the evidence for postural control and postural management interventions in CP, since Gough's seminal 2009 paper. Despite numerous interventions showing positive effects on various postural outcomes, such as range of motion, spasticity, and gross motor function, the overall quality of evidence remains low to very low, limiting the certainty of conclusions and recommendations. The lack of certainty and population heterogeneity poses

https://www.sciencedirect.com/science/article/abs/pii/S1751722224000805

Ewan is the director of Malaria Risk Stratification at the Kids Research Institute Australia. 

With over a decade of international research experience spanning the fields of astronomy, statistics, machine learning and epidemiology, Dr Ewan Cameron returned to Australia in February 2020 as an Associate Professor at Curtin University and Honorary Research Associate at The Kids Research Institute Australia. 

Within the Malaria Atlas Project, he leads a team responsible for the innovation of novel approaches to probabilistic disease mapping, with a focus on bespoke model development for sub-national risk stratification.

https://www.researchworks.net

Validating the International Classification of Functioning, Disability and Health Core Sets for Autism in a Sample of Australian School-Aged Children on the Spectrum.

Assessing functioning of children on the autism spectrum is necessary to determine the level of support they require to participate in everyday activities across contexts. 

The International Classification of Functioning, Disability and Health (ICF) is a comprehensive biopsychosocial framework recommended for classifying health-related functioning in a holistic manner, across the components of body functions, activities and participation, and environmental factors. 

The ICF Core Sets (ICF-CSs) are sub-sets of relevant codes from the broader framework that provide a basis for developing condition-specific measures. This study combined the ICF-CSs for autism, attention deficit hyperactivity disorder (ADHD) and cerebral palsy (CP) to validate the ICF-CSs for autism in an Australian sample of school-aged children. 

This cross-sectional study involved caregivers of school-aged children on the spectrum (n = 70) completing an online survey and being visited in their homes by an occupational therapist to complete the proxy-report measure based on the ICF-CSs for autism, ADHD and CP. Absolute and relative frequencies of ratings for each of the codes included in the measure were calculated and reported, along with the number of participants who required clarification to understand the terminology used. 

Findings indicate that the body functions and activities and participation represented in the ICF-CSs for autism were the most applicable for the sample. However, findings relating to environmental factors were less conclusive. Some codes not currently included in the ICF-CSs for autism may warrant further investigation, and the language used in measures based on the ICF-CSs should be revised to ensure clarity.

https://pubmed.ncbi.nlm.nih.gov/38400895/

The pod now has many (thousands!) of new listeners and we decided to bring forward our annual Q and A session with the hosts of the show.

A little more backstory of each host, a look back at why we do what we do, some incredible highlights you might have missed and why the pod is a firm proponent of evidence based practices.

We cover off many topics, including:

Is the podcast a full-time gig? 

What the difference between evidence-based and evidence-informed practice is,

Qualitative research and the rich benefits of it's implementation,

The often overlooked concept of maturation,

The view of pain and discomfort in therapy - the good and the bad, 

Hands-on vs hand-off approach and the top-down and bottom-up philosophies, 

Our scientific stance on manual facilitation techniques and why we have a section on the website that is dedicated to our conversation with the DMI (Dynamic Movement Intervention) founder(s).

It's about why research both matters and why ResearchWorks! 😉


We still plan on bringing you some incredible interviews with amazing researchers over the last 7 episodes of the year, culminating in our historic 200th episode milestone, so be sure to stayed tuned! 

LEAP-CP stands for Learning through Everyday Activities with Parents, an early detection and intervention program that adapts the international clinical practice guideline for early detection and intervention in CP for low and middle income countries. 

In this paper, LEAP-CP was tested in an RCT with Asha Bhavan Centre in India from 2019 to 2019 and has continued implementation since 2021. This study aimed to determine the acceptability, appropriateness, feasibility, penetration, retention and fidelity of LEAP CP at the Asha Bhavan Centre in India.

Golam Moula is the Research Project Coordinator, working in the field of rehabilitation for children with cerebral palsy at a national level Indian Organisation - Asha Bhavan Centre. 

He manages the LEAP CP, a randomised controlled trial of Early Intervention for infants with cerebral palsy in collaboration with the University of Queensland and is managing the ongoing implementation of the LEAP CP Program. 

The Selective Dorsal Rhizotomy and bridging the gap: co-designing a decision aid for informed decision making.

HABIT-ILE Australia: Randomised trial of Hand-Arm Bimanual Intensive Training Including Lower Extremity for Children  with bilateral cerebral palsy

A not to be missed episode! This is the extended interview with Hannah Diviney that was the stunning opening keynote to AusACPDM 2024!

Don't be fooled by the music... we continued having a chat with Hannah for another 20 minutes and it was so good, we decided to add it to the episode listing as a full fledged interview!

52 minutes of pure joy - Hannah is a wonderful communicator, role model and advocate and it is the personal stories, the lived experience perspective that makes these kinds of interviews so powerful.

If you were at AusACPDM 2024, check out the post credits extras and you'll also get the full "Ice Breaker" treatment at the beginning that was also cut from the keynote (for brevity)!

Enjoy listening!

A special post-conference interview with AusACPDM 2024 Presidential Guest Lecture Panelist Carol Shrader.

It's our final episode from the AusACPDM Conference for 2024, held in Cairns, North Queensland!

Join us for a look back at another incredible conference and some of our highlights for the week and what we are looking forward to in the future!

Also, fittingly during the Olympics games, Dayna and Ash won an award!

The very prestigious Transformative Practice Award -  given to clinicians who encourage evidence-based practice and translate research into practice! 🏆

*Producer Ed is very proud of them both - he writes these little blurbs, so it's not the hosts tooting their own horn!* 😉

Final keynote Lecture: Moving to learn, learning to move: How play, exploration and cognition intertwine in paediatric rehabilitation.

Recorded live at AusACPDM from the main exhibition hall - the pod is a little noisier than the regular episodes but it does make it feel like you're right here with us in Cairns North Queensland! 😉

Functional mobility matters

Embedding motor learning interventions using 
dynamic robotic technology.

Playground Accessibility - the Participate app:

Co-designing a mobile application to improve participation opportunities for children with neurodisabilities.