The ResearchWorks Podcast: Recent Episodes
Dr Dayna Pool and Dr Ashleigh Thornton
ResearchWorks is designed for health professionals in the area of child health, where we discuss emerging, modern, evidence based research - the behind the scenes stories, interviews with world renowned authors and researchers, material that never made the papers and a breakdown on how you can implement this into your clinical practice.
Activating parents in early childhood intervention: a multi-study examination of the PAIR model as an implementation strategy.
This study evaluated the PAIR model as a practical tool for implementing family-centred, relational early childhood intervention. Across three linked studies, they found that while brief training improved practitioners’ knowledge and confidence, sustained adoption and observable practice change were strongest when training was combined with reflective supervision.
The research highlights that organisational barriers, particularly short service blocks and limited time for reflection, remain major constraints. It provides timely evidence on what is required to translate relational approaches into consistent, scalable practice that positions parents as primary agents of their child’s development.
https://www.tandfonline.com/doi/full/10.1080/1034912X.2026.2651694
Well... actually we are over 300 episodes old but it took a while to get the band back together after the European Academy of Childhood-onset Disabilities conference!
Join Dayna, Ash and Marissa (and a special guest appearance by Ed - on video no less!)
Enhancing physically active leisure participation for children with cerebral palsy: a randomised controlled trial.
Professor Leanne Sakzewski
ResearchWorks is heading to AACPDM 2026 in Philadelphia this year!
We can't wait to see you there - it's a special 80th Annual Meeting for the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM).
Join with us as we speak with Dr Kristie Bjornson - live from EACD 2026 in Galway Ireland, the final episode that we recorded on our European tour! A preview of what to expect from this year's annual congress and a look at the host city, Philadelphia!
Register here:
https://www.aacpdm.org/events/2026/registration
It's the special summary episode of our EACD 2026 conference series live from Galway Ireland! The conference was centred around the F-words and there was a call to action on the clinical application of the F-words.
Enjoy the final episode of our European Academy of Childhood-onset Disability Annual Congress series - the ResearchWorks team are on a mini-break, which we hope you'll use to catch up the entire series of episodes from Galway.
We'll be back with full length episodes in a few weeks time!
Thank you to everyone who came by the booth to say hello, to all of our guests on the show, to Theresa for the generous shout-out in the closing ceremony and to those who keep telling Ed he needs his own podcast, or to record his own audiobook!
He's too busy editing the pod to do that but he is very honoured whenever he gets asked for a selfie.... that happens more than you might think! :)
An evidence-based, standardized, and practical diagnostic framework for cerebral palsy.
Helping Children Flourish: Parent-Informed Social Narratives to Support Readiness for Upper Limb Rehabilitation in Cerebral Palsy
The implementation of evidence-based exercise supports (FitSkills) and the impact of young people with disability participating in their communities alongside peer mentors
Health-Related Quality of Life after Guided Growth Treatment for Hip Displacement in Young Children with Cerebral Palsy
Neurowashing in Early Intervention: A Review of Neuroscience Rhetoric and an Appraisal Tool.
Non-invasive Measurement of work of breathing in children and young adults with high level cerebral palsy.
Power mobility experience, meaning and outcomes for children with complex non-ambulant cerebral palsy: A scoping review
Why do families not participate in free parent education programs? a cross sectional population based study of preschoolers
Dynamic Movement Intervention, Cuevas Medek Exercises and the state of the evidence. Challenging the status quo.
EACD 2026: Fostering self generated movement with low cost and technology based strategies (Dr Susan Duff, Dr Theresa Sukal Mouton)
Enhancing Mobility in Students with Non-Ambulatory Cerebral Palsy in School Settings: A Scoping Review of the MOVE Program
Beyond the labels: How to set goals and identify intervention ingredients for children with childhood-onset disabilities through the novel F-words Lens Tool (instructional)
Randomised Controlled trial of Vision Intervention for Seeing Impaired Babies: Learning through Enrichment (VISIBLE RCT)
Beyond tone reduction: functional effects and muscular adaptations after botulinum toxin in children with cerebral palsy.
Keynote: Changing the conversation on childhood disability: family voices and power of the F-Words
Implementing low-cost powered mobility devices in children with Cerebral Palsy: from concept to clinical practice (workshop)
Transforming the experience for families in Early Intervention whilst optimising outcomes for infants and young children with developmental challenges using Ei SMART, a multidisciplinary and co-produced evidence-based framework.
Childhood disability in the 21st Century: Out of the shadows with the world health organisation and some ‘F-words’ (Public lecture)
What a wonderful way to start this conference. The F-words have been around since 2012 and since then, we have seen an important shift in the field of child-onset disability.
What do the F-words mean in practice and how can they be used to support development and to enable children and their families to "being, becoming and belonging"?
Abstract
This article explores the often-overlooked tragedy of promising happiness through overcoming disability.
It draws on qualitative interviews and focus groups with 36 adults with cerebral palsy to explore how medical discourse shapes the ways in which individuals are encouraged to pursue a good life, leading to unintended consequences.
Sara Ahmed's theory of happiness is used to understand the dialectics of pursuing a good life through overcoming disability, revealing how medical interventions and discourse during childhood inadvertently contribute to feelings of inferiority and social alienation.
The article highlights the need to reconsider how individuals with disabilities are encouraged to pursue a good life, emphasizing the paradox of disabling effects arising from attempts to minimize and overcome disability.
https://www.sciencedirect.com/science/article/pii/S027795362500098X
Time toxicity and shared decision-making in cerebral palsy
David B Frumberg, Paige T Church, Nathan Rosenberg
PMID: 41387091 DOI: 10.1111/dmcn.70123
Abstract
Clinicians and families regularly enter into a process of shared decision-making. Seldom, if ever, however, is the critical question of time usage, or, more specifically, time-related burdens, accounted for when establishing goals and outcome measures.
Time-related burdens are not included, for instance, as an outcome measure in cerebral palsy research-something which may have profound effects about which we are unaware. By contrast, in the field of oncology, time-related burdens, or, more technically, what has been termed time toxicity, has been increasingly studied.
Building on that work, we seek to apply the concept of time toxicity to people with disabilities who interface with healthcare at great frequency.
https://pubmed.ncbi.nlm.nih.gov/41387091/
From Childhood to Adulthood: Lifespan insights into health and health service needs in cerebral palsy
Keynote session: Oceania Academy Of Cerebral Palsy And Other Childhood-onset Disabilities
We catch up with Professor Hércules Ribeiro Leite - to discuss his 2024 top-cited DMCN article!
What are the barriers and facilitators to participation of people with Down syndrome? A scoping reviewDeisiane Oliveira Souto, Marina Oliveira de Sousa, Rafaela Guimarães Ferreira, Ana Claudia Brandão, Pedro Brandão Carrera, Hércules Ribeiro Leite
Free article
Abstract
Aim: To determine the barriers and facilitators of active community participation of children, adolescents, and adults with Down syndrome.
Method: Searches were completed in five electronic databases to identify original studies about participation of children, adolescents (ages < 18 years), and adults (ages 18-59 years) with Down syndrome. Barriers and facilitators to participation were categorized into four factors: personal, social, environmental, and policy and programme. Findings were analysed and validated by a young adult with Down syndrome and a family member, using the public and patient involvement strategy.
Results: Fourteen studies were included: eight with children and adolescents and six with adults. Of the 14 studies, 10 were qualitative and four quantitative. Most studies (n = 9) investigated participation in physical activities, while only a few examined participation in community/social activities (n = 3), daily activities (n = 2), and leisure activities (n = 1). The most commonly cited barriers and facilitators were the availability of programmes and specialized professionals, transportation, as well as attitudes and behaviours. Physical and psychological characteristics of people with Down syndrome and facilities were also frequently mentioned as barriers. On the other hand, the desire to stay active and personal interest in the activity were among the most frequently reported facilitators.
Interpretation: The participation of people with Down syndrome is mainly influenced by physical or psychological factors, the support and attitudes of parents/caregivers, and the availability of specialized programmes. Given the scarcity of research investigating the participation of people with Down syndrome in community activities, daily activities, and leisure, especially in adults, more studies are still needed.
Longitudinal decline in upper-limb range of motion in adults with cerebral palsyErika Cloodt, Jenny Hedberg-Graff, Anna Lindgren, Marianne Arner, Evgenia Manousaki, Katina Pettersson, Elisabet Rodby-Bousquet
Abstract
Aim: To analyse longitudinal changes in passive range of motion (ROM) in the upper limb in adults with cerebral palsy (CP).
Method: Passive ROM for shoulder abduction and flexion, supination, and elbow and wrist extension was analysed in a longitudinal cohort of adults aged 16 to 76 years from the Swedish CP registry. Individual ROM trajectories and mean ROM curves were calculated using the Manual Ability Classification System (MACS). A mixed-effects model was used to examine changes over 3 to 13 years 7 months.
Results: In total, 1395 adults with CP were analysed (769 males, 626 females; median age 26 years). A continuous decline in shoulder ROM, supination, and wrist extension was observed across all MACS levels. Decline rates differed between MACS levels for shoulder flexion, elbow extension, and wrist extension, with steeper declines at higher MACS levels (levels IV and V). Adults classified in lower MACS levels (I and II) had greater initial ROM and slower declines compared to adults classified in higher MACS levels.
Interpretation: Upper-limb ROM continuously declined in adults with CP, particularly at higher MACS levels. The varied decline rates highlight the need for tailored interventions and systematic follow-up to maintain ROM and functional ability, especially among individuals at higher risk.
Hip Displacement in Spastic Hemiplegia: Increased Risk with Hip Internal Rotation and Adduction Irrespective of Sagittal Gait PatternZhe Yuan, Alexander Aretakis, Chris Church, M Wade Shrader, Freeman Miller, Anuj Gupta, Arianna Trionfo, Jason J Howard
Abstract
Background: Hip displacement (HD), common in cerebral palsy (CP), is reportedly less prevalent for spastic hemiplegia. Patients with a Winter-Gage-Hicks (WGH) type IV gait pattern are believed at increased risk of HD, but true prevalence is unknown. This study aimed to analyze the rates of HD according to the sagittal plane-based WGH classification and identify associated risk factors.
Methods: Patients with hemiplegic CP, ≥1 instrumented gait analysis (IGA), hip surveillance radiograph(s), and minimum 2-year follow-up were included. The primary outcome was presence of an "unsuccessful hip" defined as a migration percentage ≥30% and/or undergoing reconstructive osteotomies for HD. Secondary outcome variables included WGH type, previous surgery, sex, scoliosis, epilepsy, ventriculoperitoneal shunt, gastrostomy tube, and IGA-derived hip kinematics.
Results: Included were 144 patients (39.6% female), classified as Gross Motor Function Classification System I (45.1%) or II (54.9%), mean follow-up 9.6 ± 4.6 years. Seventeen patients (11.8%) had an unsuccessful hip outcome (age 11.6 ± 3.6 years). Stratified by WGH type, unsuccessful hip outcome rates were I: 9.5% (2/21), II: 9.4% (6/64), III: 6.7% (2/30), and IV: 24.1% (7/29); age at onset was not different between WGH types (p = 0.8). Multivariate analysis identified hip internal rotation (odds ratio [OR]: 4.7, confidence interval [CI]: 1.2-18.1, p = 0.02) and hip adduction (OR: 5.2, CI: 1.2-22.1, p = 0.02) as significant independent risk factors.
Conclusion: The rates of HD in spastic hemiplegia were higher than expected for all WGH types, particularly IV. A high index of suspicion and regular hip surveillance radiographs is required for patients with hip internal rotation and adduction, starting during preadolescence.
Level of evidence: III-Retrospective cohort observational study. See Instructions for Authors for a complete description of levels of evidence.
EACD 2026 - Galway, Ireland. "‘Mol an Óige agus Tiocfaidh Siad’ - Encourage the young and they will flourish".
We catch up with Dr Hazel Killeen President, EACD Annual Congress 2026 Lecturer in Occupational Therapy College of Medicine, Nursing and Health Sciences, University of Galway
and Dr Rory O'Sullivan Scientific Chair, EACD Annual Congress 2026 Head of Strategy & Innovation, Central Remedial Clinic.
It was an honour to sit down with the organisers of this years European congress and discuss the upcoming conference and encourage you to visit Galway this June (2026). It will be an incredible conference and the ResearchWorks team will also be there to interview keynotes and other incredible speakers from across the globe!
There is still time to register, so visit the link below for more information.
https://www.eacd2026.com/
Join Dayna and Marissa on an extended episode back, after the Oceania Conference 2026, with the one and only Dr Brian Hoare.
A candid conversation about: More isn’t always better: getting smarter about therapy dosage in children with cerebral palsy.
Join us for a wonderful look at why it isn't just about doing more - dosage is far more complex than that and we - as therapists and researchers - need to get smarter about this, especially for children with cerebral palsy.
A brilliant conference that has come to a close but we are excited about the implications both for the future and what we can implement into clinical practice today.
Dayna and Marissa walk through some of their favourite moments, interviews and the conference. Also... who doesn't like a good acronym? 😉 #REACH
R.E.A.C.H.
R - Research Priorities & Resource Allocation
E - Early Detection & Experiences
A - Assessments & Advocacy
C - Collaborations & Careers
H - Hope
A series of interviews and discussions with leading researchers, clinicians and advocates - live from Oceania Conference 2026, Hobart, Tasmania, Australia.
We catch up with Dr Joline Brandenburg!
An incredible conversation, all about: Developmental Neuromotor Disorders have altered Motor Neuron Morphology and Survival.
A continuing series of interviews from Oceania Conference 2026 - live from Hobart, Tasmania, Australia.
We have the opportunity to speak to the wonderful Dr Alison Salt and Dr Nofar Ben Itzhak - fellow Perth-ians, but meeting across the other side of our continent!
We get to speak with them both about the European Cerebral Visual Impairment Clinical Practice Guidelines.
A continuing series from Oceania Conference 2026, live from Hobart, Tasmania, Australia!
We catch up with friend of the show, Dr Theresa Sukal-Moulton!
It's our pleasure to speak with her about: Selective motor control changes from term age to 3 months of age in infants both with and without cerebral palsy.
A continuing series from Oceania Conference 2026, live from Hobart, Tasmania, Australia.
It's our pleasure to have Anne McNee on the pod - discussing: Evaluating the Effectiveness of Serial Casting for Idiopathic Toe Walking in Children with Autism Spectrum Disorder.
A continuing series from Oceania Conference 2026 - live from Hobart, Tasmania, Australia.
We catch up with Dr Fiona Russo! We're discussing her paper: Four Layers Deep: Co-Designing a Community-Led Online Navigation Program for Families of Young Children with Cerebral Palsy.
A continuing series from Oceania Conference 2026 - live from Hobart, Tasmania, Australia.
It's always a privilege to speak with Monica - we have the chance to talk to her about: Hammersmith Infant Neurological Examination findings in infants with hemiplegic cerebral palsy from 3 to 24 months.
A continuing series from Oceania Conference 2026 - live from Hobart, Tasmania, Australia!
We catch up with an old friend - Dr Iain Dutia to discuss all things fatigue.
Understanding cognitive fatigue in people with cerebral palsy
A continuing series from Oceania Conference 2026 - live from Hobart, Tasmania, Australia.
Validation and Responsiveness of activity limitation testing in framerunning for children and young people with CP.
We catch up with friend of the show Dr Reedman and Healthy Strides' Sam King!
Validation and Responsiveness of activity limitation testing in framerunning for children and young people with CP.
We catch up with Rachel Byrne - Executive Director at the Cerebral Palsy Foundation. We have the chance to discuss the topic of Scaling Australian clinical breakthroughs into a global CP roadmap.
From Australian Advances to a Global Roadmap for Cerebral Palsy
A continuing series from the Oceania 2026 Conference, live from Hobart, Tasmania, Australia.
We finish off Day 1 of the conference with the dynamic duo of Dr Johan Jarl and Assoc. Professor Ann Alriksson-Schmidt!
We have the privilege to talk Dr Jarl and Dr Alriksson-Schmidt about the educational outcomes of adolescents with spina bifida in Sweden.
A continuing series of interviews from Oceania Conference 2026, Hobart, Tasmania, Australia.
We catch up with Sophia Gribbon from the Healthy Strides Foundation.
Kindy Moves - the experience of early, intensive, group based locomotor training (from the parents perspective).
A continuing series, live from Oceania Conference 2026, Hobart, Tasmania, Australia.
We catch up with the brilliant Dr Postol to talk about her paper: "Stepping Forward" with overground exoskeletons and "More than Movement" with walking frames.
A continuing series from Oceania Conference 2026, live from Hobart, Tasmania, Australia!
We catch up with ResearchWorks own Marissa Smith!
Today we discuss the topic of evidence based guideline implementation. Real-World Application of Evidence-Based Guidelines in Paediatric Neurodisability.
A continuing series from Oceania Conference 2026 - live from Hobart, Tasmania, Australia!
NB. This episode was pre-recorded at the ResearchWorks studio prior to the conference.
We catch up with Dr Lynne McKinlay - to talk about Hope!
Hope can reduce burnout (and what you can do to become more hopeful)
A continuing series from Oceania 2026 Conference, live from Hobart, Tasmania, Australia!
We catch up with Meredith Smith to talk pain assessments!
Pain Assessment in children with in CP: PhD Platform
A continuing series from Oceania 2026 Conference - live from Hobart, Tasmania, Australia!
We continue our Oceania Conference series (2026) with an interview with John Coughlan.
Working with families, professionals, and the World Health Assembly
We catch up with friend of the show, Dr Carly Luke!
Early identification of Australian First Nations infants at high risk of neurodevelopmental disability or neurodiverse outcomes by 12 months of age.
A continuing series from Oceania Conference 2026 - live from Hobart, Tasmania, Australia!
We catch up with one of our favourites, Dr Michelle Jackman!
We get to discuss her paper: Early conversations about cerebral palsy: A message from families to health professionals
All a part of our Oceania 2026 Conference series from Hobart, Tasmania, Australia!
It's officially Day 1 of the Oceania 2026 Conference - live from Hobart Tasmania, Australia!
We catch up with Dr Hayley Smithers Sheedy and Chrissie Macdonald to discuss their paper: Cerebral palsy: temporal trends in birth prevalence in Australia (1995-2018) and epidemiology of people with CP GMFCS IV and V
We catch up with the incredible Professor Stacey Dusing!
We have the opportunity to sit down with Professor Dusing and discuss her work integrating new technologies and "BabyG" tools into CP interventions.
All a part of our Oceania 2026 Conference series from Hobart, Tasmania, Australia!
We catch up with the extraordinary Dr Tim Scott!
With Dr Scott, we discuss his presentation: In their Habitat: 3D Visualisation Clinic for remote assessment in the community of our intervention in children with cerebral palsy.
All a part of our Oceania 2026 Conference series from Hobart, Tasmania, Australia!
We're at the Oceania Academy of Cerebral Palsy and Developmental Medicine (Oceania Academy) Conference, 2026 - coming to you live from Hobart, Tasmania, Australia!
We catch up with Kirstin Pascoe - Digital Project Manager, CP Movetime | School of Allied Health, Curtin University, Perth Australia.
NB. This episode was pre-recorded at the ResearchWorks studio prior to the Oceania Academy of Cerebral Palsy and Developmental Medicine Conference.
We're at the Oceania Academy of Cerebral Palsy and Developmental Medicine (Oceania Academy) Conference, 2026 - coming to you live from Hobart, Tasmania, Australia!
We catch up with the wonderful Professor Sarah McIntyre - who has the privilege of presenting the Dinah Reddihough Oration at this year's Oceania Conference.
We're at the Oceania Academy of Cerebral Palsy and Developmental Medicine (Oceania Academy) Conference, 2026 - coming to you live from Hobart, Tasmania, Australia!
We catch up with friend of the show, Professor Cathy Morgan, to discuss: Accuracy of Early Markers to Predict Motor Severity, Type and Topography of Cerebral Palsy in Infants: Systematic Review and Meta-Analysis
Feeling like you can't do anything because you don't know where to start’—Parents' Perspectives of Barriers and Facilitators to Accessing Early Detection for Children at Risk of Cerebral Palsy
Abstract
Background: Early detection of cerebral palsy (CP) risk is possible from 12 weeks corrected gestational age (CGA) using standardised assessments; however, up to half of children at risk are not referred early, missing out on early intervention. We investigated the barriers and facilitators to accessing early intervention from the perspective of parents of children who did not receive services by 6 months CGA.
Methods: Parents of children with CP were invited to participate in qualitative semistructured interviews. Reflexive thematic analysis was used to analyse the data and develop themes.
Results: Eight mothers of children who did not receive standardised screening participated in interviews, from which three themes, 'responding to delays', 'systemic barriers' and 'complexities of diagnosis', were developed from the data.
Conclusions: Parents require more support to access and engage in early detection services; health system processes are difficult to navigate, and health professionals require education and training to recognise risk factors for CP in all health settings and refer promptly. Improving system processes, education and training and partnering early with parents to improve their experience when interacting with the health system may increase early engagement and optimise long-term outcomes for children at risk of CP and their families.
Keywords: cerebral palsy; diagnosis; mothers; paediatrics; qualitative.
Child: care, health and development (Open Access)
https://pubmed.ncbi.nlm.nih.gov/40435382/
Another Pre Season 6 episode - we catch up with the team from Oceania 2026! Oceania Academy Biennial Conference will be held in Hobart, Tasmania, 4-7 March 2026.
Keynote Speakers:
John Coughlan: Secretary General of the International Cerebral Palsy Society and Cerebral Palsy Europe, and the parent of a young adult with cerebral palsy.
Melissa McCradden is the Artificial Intelligence Director and Deputy Research Director with the Women's and Children's Health Network, and a Deputy Director and The Hospital Research Foundation Group Fellow at the Australian Institute for Machine Learning at the University of Adelaide.
Dr Lynne McKinlay is a medical leader at Sunshine Coast Health with responsibility for patient safety and clinical governance.
Riley Saban is an Australian disability advocate, entrepreneur, and international keynote speaker whose work centres on inclusive design, assistive technology, and systemic reform.
Dr Jennifer Ryan is Director of Cerebral Palsy Lifespan Health and Well-being (CP-Life) Research Centre and an Associate Professor in the School of Physiotherapy at the Royal College of Surgeons in Ireland
Scientia Professor Julian Trollor AM FAHMS, NHMRC Leadership Fellow, Director of the National Centre of Excellence in Intellectual Disability Health at UNSW Sydney.
Dr Ilisapeci Tuibeqa and Professor Susan Woolfenden: Presidential Address
Adj Prof Sarah McIntyre: Dinah Reddihough Oration
The ResearchWorks team including Dayna, Ash and Ed will be on site to provide live interviews with Keynote speakers and other incredible researchers.
If you haven't registered yet - there is still time to register, book your accommodation for Hobart (a wonderful location in Australia) and join in-person and there is also a hybrid option for those unable to travel.
https://www.oceaniaacademy.org/conference-2
If you are attending, be sure to pop by the ResearchWorks booth and say hello! We'd love to meet you and we can't wait to bring you exclusive interviews with some of the finest researchers on the planet!
Be sure to check out the ResearchWorks Academy at www.researchworks.academy (its FREE to register).
From AI and Machine Learning based tools, to Gait analysis tools, to report templates, decision trees, custom calculators for GMFMER/ENE and Goal Attainment Scale, Gesture and Switch based video games and other multimedia, it's a one-stop-shop for tools to implement research into clinical practice!
The ResearchWorks Academy is a completely FREE online hub - with resources for clinicians and researchers. Visit www.researchworks.academy
for a video guide to this week's special episode, be sure to visit our YouTube channel:
https://www.youtube.com/watch?v=9XCdovk0ZZU
From using AI with curated articles, to classification tools, outcome measures, machine learning based 2D gait analysis, augmented reality video games, GMFMER and ENE calculator as well as a goal attainment scale calculator, AI driven report templates and other multimedia - it's been designed as a one stop shop for evidence based practice.
Updates are provided every month and it's all accessible via the web (desktop or mobile) for FREE!
In addition, we will have a range of micro-credentialing courses (paid and free) by world renowned researchers, lecturers and speakers!
If you have any queries or suggestions, be sure to get in contact with the ResearchWorks Academy team - and we'll see how we can assist you to implement the latest in evidence and research into your clinical practice!
www.researchworks.academy
It's our final regular season episode of 2025!
We hope you've enjoyed Season 5 of the ResearchWorks Podcast. From EACD to AACPDM, the conference video and interview series, our DMI and CME special, to the launch of the ResearchWorks Academy - 2025 has been the biggest year yet for the pod!
In 2026, we plan to bring you even more of the latest research from conferences from across the globe, with our partnerships with EACD, AACPDM and AusACPDM (now known as the OCEANIA Academy). We are working with international partners across the globe to bring you the very latest breakthroughs in research and evidence.
The ResearchWorks Academy will continue to be free and open access and soon with a premium range of micro credentialing courses from renowned lecturers, teachers, researchers and academics - providing the very latest in research and evidence in a practical format to enhance your practice.
Enjoy our look back at 2025 and we wish all of our listeners (and viewers!) happy holidays over the festive breaks and we look forward to a bigger and better 2026 ahead!
www.researchworks.academy
Taking a strengths-based approach to developmental disability: the F-words for child developmentBMJ Paediatrics Open - Dr Olaf Kraus de Camargo
“When challenges exist, children and families may benefit from supports that are tailored to their individual strengths and support needs, irrespective of whether or not a child has one or more diagnosed condition(s).”
Strengths-based and client-centred approaches in the field of childhood disability have been proposed in healthcare for decades, but in many places in the world, our service structures and therapeutic endeavours still are directed at fixing/compensating deficits in a prescriptive way. In the field of child developmental (disability) services, we have recently seen the publication of Canadian and Australian policies and frameworks that explicitly endorse this strengths-based approach, recommending in particular the use of the F-words for Child Development first published by CanChild scientists Peter Rosenbaum and Jan Willem Gorter in 2012.
This commentary reflects on how strength-based approaches and client-centred care, developed over the last 50 years, have culminated in a paradigm shift in how we define and promote ‘health’.
https://bmjpaedsopen.bmj.com/content/9/1/e003418
A shorter than usual episode about the future of the pod - 2026 and beyond.
We will be continuing our support of the Oceania (formerly AusACPDM) conference, the EACD conference and the AACPDM conference in 2026 with in-person, on-site, live broadcasts from Australia, Europe and the Americas!
2025 has also seen the team behind the pod launch the ResearchWorks Academy - an entirely FREE online portal for clinicians and researchers, designed to be a one-stop site for all your clinical application needs. You can register today for full access.
From AI and ML driven toolsets, to reports, templates, flowcharts, decision trees, outcome measures and more - we are aiming to empower clinicians across the globe with the tools needed to implement evidence based practices. Let us know if you have any suggestions for the site and how we can continue to develop the resources available.
On demand courses will also soon launch - we are working with international partners from across the ResearchWorks network to provide the very latest information, courses and educational tools too, so stay tuned!
Visit www.researchworks.academy
In 2024, a landmark review of the School Education Act 1999 was undertaken in Western Australia. Why? Because our education laws — drafted over 25 years ago — haven’t kept pace with modern understandings of disability, inclusion, or the rights of children and families.
This review, driven by an expert panel with deep experience in education, disability, and human rights, was driven by one clear question: Does our law support every child to access and thrive in school — or are there too many barriers to access and inclusion for students with disability?
What followed was an in-depth consultation with families, clinicians, educators, and young people with lived experience, resulting in 15 recommendations that aim to remove barriers — from enrollment gatekeeping, to inconsistent support, to exclusionary discipline, replacing them with legal obligations for inclusion, voice, and access.
For allied health clinicians, this matters. Because so often, we’re working with children whose ability to engage in school is shaped by systems, not just skills. Today, we unpack what this report means — and what could change if we get this right.
Early mobility and crawling: beliefs and practices of Pediatric Physical Therapists in the United States.
Kari S Kretch Stacey C Dusing, Regina T Harbourne, Lin-Ya Hsu, Barbara A Sargent, Sandra L Willett
- PMID: 38127897
- PMCID: PMC10873088
- DOI: 10.1097/PEP.0000000000001063
Abstract
Purpose: To characterize beliefs of pediatric physical therapists (PTs) in the United States regarding the role of crawling in infant development and clinical practice.
Methods: Pediatric PTs reported their beliefs about early mobility and crawling, clinical approaches related to early mobility and crawling, and agreement with the removal of crawling from the Centers for Disease Control and Prevention (CDC)'s updated developmental milestone checklists in an online survey. Analyses examined associations between information sources and beliefs, between beliefs and clinical approaches, and between beliefs and CDC update opinions.
Results: Most participants believed that crawling was important (92%) and linked to a variety of positive developmental outcomes (71%-99%) and disagreed with its removal from the CDC checklists (79%). Beliefs were linked with clinical approaches focused on promoting crawling and discouraging other forms of mobility.
Conclusions: Further research is needed to determine whether pediatric PTs' beliefs and clinical practices are supported by evidence.
AACPDM special: Effects of Power Training combined with interval treadmill training on walking capacity versus performance in real world settings in youth with cerebral palsy.
This paper is a contender for the AACPDM’s highest abstract honour - the Gayle G Arnold Award - to be presented at The American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) Conference - the 79th Annual Meeting!
“Celebrating Resilience” October 15-18, 2025, to be held in New Orleans, LA.
Where’s the Evidence? Challenging Therapists to Stop Legitimizing Dynamic Movement Intervention and Cuevas Medek Exercises.
Paleg, Ginny PT, MPT, DScPT; Pool, Dayna PT, PhD; Hidalgo-Robles, Álvaro PT, MSc; Frumberg, David MD; Livingstone, Roslyn OT, MSc(RS); Damiano, Diane PT, PhD
Open Access!
https://journals.lww.com/pedpt/fulltext/9900/where_s_the_evidence__challenging_therapists_to.204.aspx
Dynamic Movement Intervention (DMI) and Cuevas Medek Exercises (CME) are promoted as innovative neurorehabilitation methods for children with neurological disabilities, yet both rely on outdated reflex-hierarchical models rather than contemporary motor learning principles.
A review of the literature reveals that CME, despite 5 decades of use, is supported only by a few case reports and 2 small, biased comparative studies. DMI, introduced in 2021, has no published empirical evidence beyond a single conference abstract. Thus, both interventions remain at Sackett Level 5—no evidence.
The ethical implications are substantial. Families often pay thousands for intensive, noncovered therapies that may displace meaningful participation in education and social life.
Therapists have a professional responsibility to avoid legitimizing unproven practices and to prioritize interventions supported by robust evidence. Pediatric rehabilitation should shift toward child-led, functional, and task-specific approaches grounded in modern motor learning science, with professional bodies and insurers withholding endorsement of non evidence-based methods.
Six-minute walk test reference values in ambulatory children with myelomeningoceleKarina A Zapata, Rosa H Cooksey, Daralyn K Fulton, Hayley B Shelton, Chan-Hee Jo, Richard C Adams
Affiliations Expand
- PMID: 40556501
- DOI: 10.1111/dmcn.16397
Abstract
Aim: To determine the baseline pediatric reference values of the 6-minute walk test (6MWT) distance (6MWD) across spina bifida functional lesion levels, the associations between the 6MWD and the distances of the 1-minute and 2-minute walk tests, and assess the impact of social determinants on the 6MWD.
Method: This prospective cohort study collected the 6MWD of 145 ambulatory children (72 male, 73 female; mean age = 11 years 2 months [range: 6 years 0 months-17 years 11 months]) with mid-lumbar-level (n = 59), low-lumbar-level (n = 28), and sacral-level (n = 58) myelomeningocele at a pediatric hospital. Proxies of social determinants included insurance type and Area Deprivation Index (ADI). Pairwise comparisons evaluated the 6MWD according to lesion level and myelomeningocele functional classification (MMFC) group.
Results: The mean 6MWD was shorter for myelomeningocele at the mid-lumbar versus low-lumbar versus sacral lesion levels (p < 0.001), and MMFC2 versus MMFC3 versus MMFC4 (p < 0.001). The mean 1-minute and 2-minute walking distances were strongly associated with the 6MWD. Children with public insurance and a high ADI walked significantly fewer meters than children with private insurance (p = 0.023) and a low ADI (p = 0.048).
Interpretation: Children with higher anatomical functional lesion levels walked shorter distances than those with lower levels and according to MMFC group. The 1-minute and 2-minute walk tests are adequate substitutes for the 6MWT. Lower socioeconomic status affecting decreased walking capacity merits interventions to maximize opportunities for activity.
Trajectories of Fidgety Movements in Infants with and without medical complexity.
This paper is a finalist for AACPDM’s highest honour - the Gayle G Arnold award, chosen and highlighted by the scientific review committee for it’s high quality.
We look ahead at The American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) Conference - the 79th Annual Meeting!
“Celebrating Resilience” October 15-18, 2025, to be held in New Orleans, LA.
Continuing our AACPDM 2025 Preview series!
Effect of high-frequency, low magnitude vibration on physical activity and physical function in children with cerebral palsy: a randomised controlled trial
This paper is a contender for the AACPDM’s highest abstract honour - the Gayle G Arnold Award!
There is still time to register for the conference in beautiful New Orleans - Visit https://www.aacpdm.org/events/2025 for all the details!
The effect of immediate weightbearing after planovalgus foot reconstruction in ambulatory children with cerebral palsy
Background and Objective(s)
Planovalgus (PV) is a common foot deformity in children with cerebral palsy (CP). Orthopedic surgery is widely established as an effective treatment for deformity correction though there is clinical variation in post-op therapy protocols. Immediate weightbearing (WB) after PV foot correction could accelerate recovery but concern for post-op complications causes reluctance. The aim of this study was to determine the prevalence of complications after PV foot surgery in children with early WB vs. non-WB (NWB).
Study Participants & Setting
135 ambulatory children with CP (GMFCS I (12%), II (58%), III (30%)) met inclusion criteria and were included from a children’s hospital setting and assessed in the gait laboratory.
Materials/Methods
This IRB-approved retrospective cohort study included ambulatory children (GMFCS I-III) with CP and PV foot deformity who underwent reconstructive surgery and pre (within 18 months) and post-op (1-3 years) gait analyses. Complications were defined in three timeframes: (1) short-term, within 6 months of surgery, by radiograph review for nonunion, hardware failure, or infection requiring return to surgery, (2) mid-term, at 1-3 years, by pedobarographic assessment, and (3) long-term, > 3 years, by recurrence requiring surgical revision. Fisher exact tests compared the prevalence of complications between immediate WB and NWB groups. Regression analysis evaluated the relationship between complications and child, surgical, and post-operative factors.
Results
140 surgical events were completed on 224 feet at age 12.7 ± 2.8 years. Following surgery, 84% of children followed an immediate WB protocol, and 16% were NWB for the first six weeks. The prevalence of short-term complications between the WB and NWB groups was no different (nonunion/hardware failure/infection, WB 3%/1%/0%; NWB, 0%/3%/0%; p>0.9). There were no between group differences in mid-term correction status (under- corrected/corrected/over-corrected, WB 31%/45%/24%; NWB, 32%/54%/14%; p>0.9). The prevalence of long-term recurrence necessitating surgery was not significantly different (WB/NWB, 3%/11%; 8.5±2.8 years post-op; p>0.9). Regression analysis demonstrated WB status was not a significant predictor of correction status or long-term recurrence requiring revision (p>0.05).
Conclusions/Significance
Complication rates were very low after planovalgus foot correction surgery in ambulatory children with CP. There were no significant differences in complications, clinical outcomes, or need for surgical revision between groups who followed immediate WB vs. NWB post-op protocols. Immediate WB after PV foot correction surgery presented no increased risks compared to NWB and should be encouraged in children with CP. Early WB, standing, and walking may prevent disuse muscle weakness and promote faster recovery of gross motor mobility, enhancing patient care. Future studies should examine the impact of early WB on recovery time and long-term functional outcomes.
Mobility device use in children with cerebral palsyElizabeth Maus, Ben Reader, Jill C Heathcock
Abstract
Aims: To quantify the number and types of mobility devices used by children with cerebral palsy (CP) and explore the relationships between Gross Motor Functional Classification System (GMFCS) level, age, insurance, income, and number and types of devices.
Method: This was a secondary analysis of a cohort from a larger randomized controlled trial. Data from 89 children with CP (56.2% male and 43.8% female; mean = 4 years 11 months; SD = 2 years 0 months; range 2 years 0 months-8 years 10 months) were collected from electronic medical records, parent-completed medical history questionnaires, and the Hollingshead Four-Factor Index. The analysis included quasi-Poisson and logistical regressions.
Results: Most children had Medicaid insurance (83.2%). All income and GMFCS levels were represented. The most common mobility devices were lower-extremity orthoses (75.3%). The number of devices used increased by 8.2% for each 1-year increase in age. Children classified in GMFCS level V used 5.1, 2.9, and 1.6 times more mobility devices than children classified in GMFCS levels I, II, and III respectively. GMFCS level also predicted the use of wheelchairs, bath chairs, and standers. Income and insurance were not significant.
Interpretation: Children used more devices as age and GMFCS level increased. Device access is an important public health initiative.
Brain lesion extent, growth, and body composition in children with cerebral palsyStina Oftedal, Simona Fiori, Kristie L Bell, Katherine A Benfer, Leanne Sakzewski, Robert S Ware, Peter S W Davies, Roslyn N Boyd
- PMID: 40745624
- DOI: 10.1111/dmcn.16427
Abstract
Aim: To investigate the relationship between growth, body composition, and the extent of brain lesion measured using structural magnetic resonance imaging (MRI) in children with cerebral palsy (CP).
Method: This prospective population-based cohort study recorded 359 assessments from 124 children with CP aged 18 months to 13 years (38% female, Gross Motor Function Classification System [GMFCS] levels I = 50, II = 24, III = 17, IV = 12, and V = 21). A neurologist assessed the extent of the brain lesion using a validated semi-quantitative scale (global, basal ganglia/brainstem, hemispheric and corpus callosum scores). Height (HTZ), weight (WTZ), and head circumference (HDZ) z-scores were calculated. The Fat Mass Index (FMI) and Fat-Free Mass Index (FFMI) were determined using a deuterium dilution technique, bioelectrical impedance or dual-energy X-ray absorptiometry, and height. Data were analysed using mixed-effects linear regression.
Results: Greater global (β = -0.04, 95% confidence interval [CI] = -0.07 to -0.02), basal ganglia/brainstem (β = -0.06, 95% CI = -0.11 to -0.02), corpus callosum (β = -0.27, 95% CI = -0.27 to -0.12), and hemispheric (β = -0.08, 95% CI = -0.12 to -0.04) scores were associated with lower HTZ. Greater global (β = -0.03,95% CI = -0.06 to -0.01) and corpus callosum (β = -0.23, 95% CI = -0.40 to -0.06) scores were associated with lower WTZ. A greater hemispheric score (β = -0.06, 95% CI = -0.119 to -0.001) was associated with lower HDZ. Semi-quantitative MRI scores were not associated with FMI or FFMI.
Interpretation: Greater extent of the brain lesion was significantly associated with lower HDZ, HTZ, and WTZ but not body composition in children with CP aged 18 months to 13 years.
Keywords: Body composition; Brain imaging; Brain lesion; Cerebral palsy; Growth.
Our preview of the upcoming AACPDM Conference in New Orleans USA.
We look ahead at The American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) Conference - the 79th Annual Meeting!
“Celebrating Resilience” October 15-18, 2025, to be held in New Orleans, LA.
We catch up with AACPDM First Vice President Dr Theresa Sukal-Moulton and Scientific Program Committee Co-Chair Dr Paige Church.
You can still register at the link below!
https://www.aacpdm.org/events/2025
Our annual wrap-up and summary of the combined EACD / IAACD 2025 Conference, live from Heidelberg Germany!
Be sure to catch up on our entire EACD / IAACD 2025 conference series, both audio and video casts!
For information on the ResearchWorks Academy, be sure to visit the academy website (www.researchworks.academy), register for FREE for the discussion forum and check out all the tools, apps, AI powered search and chat features on the main academy website - it's FREE for the next 60 days!
We'd love to get your feedback and thoughts on the site!
We catch up with friend of the pod, Dr Wade Shrader!
Pain trajectories, care coordination, CP and surgery keynote: What are the long-term implications of orthopaedic surgery for children with cerebral palsy, and how can care coordination enhance their outcomes?
Another brilliant interview with researchers from EACD / IAACD 2025 at Heidelberg Germany!
We catch up with Professor Ana Carolina de Campos!
Sexuality and relationship in young adults with CP: Why is it important to address sexuality and relationships in young adults with cerebral palsy, and what are some key considerations?
Another brilliant interview with researchers from EACD / IAACD 2025 at Heidelberg Germany!
We catch up with Professor Petrus De Vries!
Coaching of PWLE in LMIC with behavioral interventions: What are the key components of effective coaching programs for people with lived experience in low- and middle-income countries, particularly those focusing on behavioral interventions?
Another brilliant interview with researchers from EACD / IAACD 2025 at Heidelberg Germany!
We catch up with Professor Jan Kirschner!
Gene therapy for childhood onset disability from neuromuscular disorders: What lessons have you learned from gene therapy in neuromuscular disorders, and how do you see this approach evolving in the future?
Another brilliant interview with researchers from EACD / IAACD 2025 at Heidelberg Germany!
We catch up with Professor Paula Chagas!
GMFR: The Gross Motor Function Family Report - GMF-FR aims to measure gross motor activity in the home and community settings, reported by the families.
Another brilliant interview with researchers from EACD / IAACD 2025 at Heidelberg Germany!
We catch up with Assistant Professor Sudarshan Dayanidhi!
Muscle morphology and Macrophages: What can muscle morphology tell us about the progression of cerebral palsy, and how can this inform treatment approaches?
Another brilliant interview with researchers from EACD / IAACD 2025 at Heidelberg Germany!
We catch up with Professor Kaat Desloovere!
Gait Classification: How does gait classification help in tailoring rehabilitation strategies for children with cerebral palsy?
Another brilliant interview with researchers from EACD / IAACD 2025 at Heidelberg Germany!
We catch up with Associate Professor Guro Anderson!
Lessons learned from 20 years of CP registry: What have been the most significant insights gained from 20 years of cerebral palsy registry data, and how have they shaped clinical practice?
Another brilliant interview with researchers from EACD / IAACD 2025 at Heidelberg Germany!
We catch up with Keynote speaker: Professor Tobias Banaschewski!
Long-term impact of early life adversity on antisocial brain: What have been the most significant findings from your research on the long-term impact of early life adversity on the brain, particularly in relation to antisocial behaviour?
Another brilliant interview with researchers from EACD / IAACD 2025 at Heidelberg Germany!
We catch up with Vice President of EACD / IAACD 2025 Dr Christian Shaaf!
A behind the scenes look at the conference and how it has all come together!
Join us for another brilliant conversation with a brilliant researcher - live from the EACD / IAACD Conference 2025, in Heidelberg Germany!
We catch up with Chair of the Intensive Therapy Session: Professor Diane Damiano!
Diane's work has been incredibly influential and has certainly shaped the field of physical therapy. We check in with her about research and what has made the most significant shift over the past few decades.
We also get Diane's thoughts about the research that is currently being done and presented in the intensive therapy space. And amongst many other topics, we discuss the key challenges in translating CP research into clinical practice and what the future of motor interventions for childhood disabilities looks like!
Join us for another brilliant conversation with a brilliant researcher - live from the EACD / IAACD Conference 2025, in Heidelberg Germany!
We catch up with Keynote speaker: Professor Jill Zwicker
DCD and ADHD keynote: How do developmental coordination disorder and ADHD intersect, and what are the implications for diagnosis and treatment?
Join us for another brilliant conversation with a brilliant researcher - live from the EACD / IAACD Conference 2025, in Heidelberg Germany!
We catch up with Dr Jorn Ockerman!
We last spoke with Jorn nearly 2 year ago and pre-PhD! The now Dr Ockerman is passionate about gamerfication and how this can impact on research and clinical application!
Join us for another brilliant conversation with a brilliant researcher - live from the EACD / IAACD Conference 2025, in Heidelberg Germany!
We catch up with Debora Claesson!
A parents perspective on Research and the real life impact of bringing the evidence to the fore! Amongst many other topics, we discuss her advocacy for evidence-based therapy has changed the landscape of rehabilitation for children with disabilities.
Join us for another brilliant conversation - live from the EACD / IAACD Conference 2025, in Heidelberg Germany!
We catch up with Dr Kath Benfer!
It's all about Early Intervention for CP in LMICS. We discuss what are the most effective early intervention strategies for children with cerebral palsy in low- and middle-income countries, and how can they be scaled up?
Join us for another brilliant conversation with a brilliant researcher - live from the EACD / IAACD Conference 2025, in Heidelberg Germany!
We catch up with Professor Thorsten Langer!
Transition of youth with Duchenne muscular dystrophy: What are the key challenges in transitioning youth with Duchenne muscular dystrophy to adult care, and how can we address them?
Join us for another brilliant conversation with a brilliant researcher - live from the EACD / IAACD Conference 2025, in Heidelberg Germany!
We catch up with Professor Hercules Leite!
The F-word Lens: How does the F-words lens change the way we approach intervention for children with cerebral palsy?
Join us for another brilliant conversation with a brilliant researcher - live from the EACD / IAACD Conference 2025, in Heidelberg Germany!
We catch up with Professor Ann-Cristin Eliasson!
Remote early intervention for infants at high risk of CP: How have remote early intervention programs impacted families and their children with cerebral palsy?
Join us for another brilliant conversation with a brilliant researcher - live from the EACD / IAACD Conference 2025, in Heidelberg Germany!
We're in Maulbronn Germany - at the pre-conference sessions!
We catch up with Professor Boyd - the Vice President of EACD / IAACD 2025! We discuss all things early intervention, randomised control trials, collaborations and the implementation and adoption of the new, weening off what we are wedded to!
Be sure to visit the m:con Mannheim YouTube channel for the special video-casts we created for the Pre-Conference - all set in the beautiful location of Maulbronn Monastery - a UNESCO world heritage site!
The video-casts will be available on the mconmannheim YouTube channel over the course of the conference and mirrored to the ResearchWorks YouTube channel after the conference too!
https://www.youtube.com/@mconmannheim/videos
We're in Maulbronn Germany - at the pre-conference sessions!
We catch up with Professor Fehlings and discuss all things early intervention, genetics, biomarkers, being curious, asking questions and the blend of research and clinical work and the call of implementation!
Be sure to visit the m:con Mannheim YouTube channel for the special video-casts we created for the Pre-Conference - all set in the beautiful location of Maulbronn Monastery - a UNESCO world heritage site!
The video-casts will be available on the mconmannheim YouTube channel over the course of the conference and mirrored to the ResearchWorks YouTube channel after the conference too!
https://www.youtube.com/@mconmannheim/videos
We're in Maulbronn Germany - at the pre-conference sessions!
We catch up with Dr Cathy Morgan - we cover off AI, artificial intelligence, early intervention and early detection, developing AI models, best practice ML processes, dissecting and analysing video and Data! Data! Data!
CP360 - a bold new initiative accelerating global action for the 50 million people living with cerebral palsy!
Be sure to visit the m:con Mannheim YouTube channel for the special video-casts we created for the Pre-Conference - all set in the beautiful location of Maulbronn Monastery - a UNESCO world heritage site!
The video-casts will be available on the mconmannheim YouTube channel over the course of the conference and mirrored to the ResearchWorks YouTube channel after the conference too!
https://www.youtube.com/watch?v=ph0t7Q6lZas
We're in Maulbronn Germany - at the pre-conference sessions!
We catch up with Dr Boyer - a discussion about her incredible work in the specific area of pain research in cerebral palsy!
Be sure to visit the m:con Mannheim YouTube channel for the special video-casts we created for the Pre-Conference - all set in the beautiful location of Maulbronn Monastery - a UNESCO world heritage site!
The video-casts will be available on the mconmannheim YouTube channel over the course of the conference and mirrored to the ResearchWorks YouTube channel after the conference too!
https://www.youtube.com/@mconmannheim/videos
We're in Maulbronn Germany - at the pre-conference sessions!
We catch up with Professor Dusing - we discuss what therapy should look like, what it could look like and how we should be incorporating PLAY in therapy (it's much more complex than you might think!). It needs to be self-generated by the child to truly be play!
Be sure to visit the m:con Mannheim YouTube channel for the special video-casts we created for the Pre-Conference - all set in the beautiful location of Maulbronn Monastery - a UNESCO world heritage site!
The video-casts will be available on the mconmannheim YouTube channel over the course of the conference and mirrored to the ResearchWorks YouTube channel after the conference too!
https://www.youtube.com/watch?v=a27lVhpb6XQ
We're in Maulbronn Germany - at the pre-conference sessions!
We catch up with Professor Imms - the IAACD President, a look at how Professor Imms came to lead the IAACD, her involvement in the IAACD and her passion about all things participation!
Be sure to visit the m:con Mannheim YouTube channel for the special video-casts we created for the Pre-Conference - all set in the beautiful location of Maulbronn Monastery - a UNESCO world heritage site!
The video-casts will be available on the mconmannheim YouTube channel over the course of the conference and mirrored to the ResearchWorks YouTube channel after the conference too!
https://www.youtube.com/watch?v=YxnWIR6iNio
We're in Maulbronn Germany - at the pre-conference sessions!
We catch up with Professor Novak - State of the Evidence, traffic lights. A brilliant conversation about her seminal work and the future of stem cells and early intervention.
"...i did it myself..." "...whose brain is doing the work?..."
Be sure to visit the m:con Mannheim YouTube channel for the special video-casts we created for the Pre-Conference - all set in the beautiful location of Maulbronn Monastery - a UNESCO world heritage site!
The video-casts will be available on the mconmannheim YouTube channel over the course of the conference and mirrored to the ResearchWorks YouTube channel after the conference too!
https://www.youtube.com/watch?v=Ql9n_jw2u88
We're in Maulbronn Germany - at the pre-conference sessions!
We catch up with Professor Blank - EACD / IAACD 2025 President and a man giving voice to the international community! Professor Blank has visited a number of countries world-wide onsite in order to hear the international voices on childhood-onset disabilities.
Be sure to visit the m:con Mannheim YouTube channel for the special video-casts we created for the Pre-Conference - all set in the beautiful location of Maulbronn Monastery - a UNESCO world heritage site!
The video-casts will be available on the mconmannheim YouTube channel over the course of the conference and mirrored to the ResearchWorks YouTube channel after the conference too!
https://www.youtube.com/watch?v=N8cvgjXr44E
We're in Maulbronn Germany - at the pre-conference sessions!
We catch up with Professor Bleyenheuft - the Habit-ile story, it's origins and what the future holds!
Be sure to visit the m:con Mannheim YouTube channel for the special video-casts we created for the Pre-Conference - all set in the beautiful location of Maulbronn Monastery - a UNESCO world heritage site!
The video-casts will be available on the mconmannheim YouTube channel over the course of the conference and mirrored to the ResearchWorks YouTube channel after the conference too!
https://www.youtube.com/watch?v=7mLUsArpXDA
We're in Maulbronn Germany - at the pre-conference sessions!
We catch up with Dr Greaves - all about upper limb therapy, unilateral cerebral palsy, bimanual therapy and all things hands-off!
Be sure to visit the m:con Mannheim YouTube channel for the special video-casts we created for the Pre-Conference - all set in the beautiful location of Maulbronn Monastery - a UNESCO world heritage site!
The video-casts will be available on the mconmannheim YouTube channel over the course of the conference and mirrored to the ResearchWorks YouTube channel after the conference too!
https://www.youtube.com/watch?v=GKt_gSrWhGI
We're in Maulbronn Germany - at the pre-conference sessions!
We catch up with Dr Sebastian Schroeder - a look behind the scenes at EACD / IAACD 2025. Dr Schroeder is the Chair of the Scientific Committee for the conference and one of the key personnel behind the combined congress this year. Hearing his heart for the conference was a beautiful insight into the interdisciplinary and collaborative philosophies that Dr Schroeder and his team brought to the fore.
Be sure to visit the m:con Mannheim YouTube channel for the special video-casts we created for the Pre-Conference - all set in the beautiful location of Maulbronn Monastery - a UNESCO world heritage site!
The video-casts will be available on the mconmannheim YouTube channel over the course of the conference and mirrored to the ResearchWorks YouTube channel after the conference too!
https://www.youtube.com/watch?v=kH1TtdUvDCY
We're in Maulbronn Germany - at the pre-conference sessions!
We catch up with Professor Ortibus - a conversation centred around CVI (cerebral visual impairment)!
Be sure to visit the m:con Mannheim YouTube channel for the special video-casts we created for the Pre-Conference - all set in the beautiful location of Maulbronn Monastery - a UNESCO world heritage site!
The video-casts will be available on the mconmannheim YouTube channel over the course of the conference and mirrored to the ResearchWorks YouTube channel after the conference too!
https://www.youtube.com/watch?v=YvftmDsnx5s
Longitudinal trajectory of medial gastrocnemius muscle growth in the first years of lifeAim: To define the longitudinal trajectory of gastrocnemius muscle growth in 6- to 36-month-old children with and without spastic cerebral palsy (SCP) and to compare trajectories by levels of gross motor function (Gross Motor Function Classification System, GMFCS) and presumed brain-lesion timing.
Method: Twenty typically developing children and 24 children with SCP (GMFCS levels I-II/III-IV = 15/9), were included (28/16 females/males; mean age at first scan 15.4 months [standard deviation 4.93, range 6.24-23.8]). Three-dimensional freehand ultrasound was used to repeatedly assess muscle volume, length, and cross-sectional area (CSA), resulting in 138 assessments (mean interval 7.9 months). Brain lesion timing was evaluated with magnetic resonance imaging classification. Linear mixed-effects models defined growth rates, adjusted for GMFCS levels and presumed brain-lesion timing.
Results: At age 12 months, children with SCP showed smaller morphological muscle size than typically developing children (5.8 mL vs 9.8 mL, p < 0.001), while subsequently no differences in muscle growth were found between children with and without SCP (muscle volume: 0.65 mL/month vs 0.74 mL/month). However, muscle volume and CSA growth rates were lower in children classified in GMFCS levels III and IV than typically developing children and those classified in GMFCS levels I and II, with differences ranging from -56% to -70% (p < 0.001).
Interpretation: Muscle growth is already hampered during infancy in SCP. Muscle size growth further reduces with decreasing functional levels, independently from the brain lesion. Early monitoring of muscle growth combined with early intervention is needed.
Are we focusing too much on body structures and functions? Should participation and the F-words—Fun, Family, Friends, Fitness, Function, and Future—be leading the way?
Dr. Ginny Paleg is a pediatric physiotherapist specializing in children with severe motor impairments, particularly those at GMFCS Levels IV and V. She holds a Master’s in Physical Therapy from Emory University and a Doctorate from the University of Maryland Baltimore.
Certified in the Prechtl GMA and HINE, Dr. Paleg integrates evidence-based tools with coaching and routines-based interventions. With over 60 peer-reviewed publications, her research spans standers, supported stepping, and power mobility for children with complex needs. She is the lead author of the AACPDM Hypotonia Care Pathway and serves on the AACPDM Care Pathway Council, having held key roles in both AACPDM and the EACD.
If you’ve ever found yourself in a heated Facebook thread or a passionate discussion with colleagues about what really matters in pediatric therapy, you’re not alone. Dr. Ginny Paleg moderates some of these spaces, and what’s always clear is that therapists deeply care—they want children to thrive. But the differences in approach can be striking.
Today, we’re diving into the heart of this tension through the lens of the ICF-CY framework. It’s a big conversation, and one we think is absolutely worth having.
Interrupting normal broadcasting for a quick announcement! The ResearchWorks team are heading to Heidelberg Germany in a few weeks time to interview guests from across Europe and around the globe!
From video-casts to audio-casts, it will be a full integration into the conference and we're excited to bring you all the latest in research from Heidelberg - with dozens of interviews!
We still have a number of episodes pre-conference to release with dozens more lined up for the months of June/July!
Also - stay tuned for an extra special announcement - it will be worth the wait, we promise!
Identifying and Evaluating Young Children with Developmental Central Hypotonia: An Overview of Systematic Reviews and ToolsChildren with developmental central hypotonia have reduced muscle tone secondary to non-progressive damage to the brain or brainstem. Children may have transient delays, mild or global functional impairments, and the lack of a clear understanding of this diagnosis makes evaluating appropriate interventions challenging.
This overview aimed to systematically describe the best available evidence for tools to identify and evaluate children with developmental central hypotonia aged 2 months to 6 years.
A systematic review of systematic reviews or syntheses was conducted with electronic searches in PubMed, Medline, CINAHL, Scopus, Cochrane Database of Systematic Reviews, Google Scholar, and PEDro and supplemented with hand-searching. Methodological quality and risk-of-bias were evaluated, and included reviews and tools were compared and contrasted. Three systematic reviews, an evidence-based clinical assessment algorithm, three measurement protocols, and two additional measurement tools were identified.
For children aged 2 months to 2 years, the Hammersmith Infant Neurological Examination has the strongest measurement properties and contains a subset of items that may be useful for quantifying the severity of hypotonia.
For children aged 2-6 years, a clinical algorithm and individual tools provide guidance. Further research is required to develop and validate all evaluative tools for children with developmental central hypotonia.
Gross Motor Family Report: Refinement and evaluation of psychometric properties
Elton D. D. Magalhães, Peter Rosenbaum, Marilyn Wright, F. Virginia Wright, Lesley Pritchard, Kennea M. A. Ayupe, Ana Carolina de Campos, Rosane S. Morais, Hercules R. Leite, Paula S. C. Chagas
Abstract
Aim
To refine the Gross Motor Family Report (GM-FR) using parents' input and to evaluate its psychometric properties.
Method
In this measurement study, 12 parents of children and adolescents with cerebral palsy (CP), aged 2 to 18 years, classified in all levels of the Gross Motor Function Classification System (GMFCS), were interviewed about their experience completing the GM-FR (content validity). Parents' feedback was used to refine the measure which was then completed by 146 families to evaluate internal consistency, and discriminative and concurrent validity. Forty-six parents completed the GM-FR again, 7 to 30 days later, to evaluate test–retest reliability.
Results
GM-FR scoring, pictures, descriptions, and the total number of items were revised based on parents' feedback. The GM-FR version 2.0 demonstrated high internal consistency (Cronbach's α = 0.99), no floor/ceiling effects, and excellent test–retest reliability (intraclass correlation coefficient = 0.99). GM-FR scores discriminated between GMFCS levels (p less than 0.05) and were strongly negatively correlated with GMFCS level (r = −0.92; p less than 0.001). GM-FR scores correlated positively and strongly with the Gross Motor Function Measure-66 (r = 0.94; p less than 0.001) and the Pediatric Evaluation of Disability Inventory – Computer Adaptive Test mobility domain (r = 0.93; p less than 0.001).
Interpretation
Active participation of families in the GM-FR's development facilitated creation of a family-friendly instrument. This study provides strong evidence of reliability and validity to support GM-FR use in clinical practice and research for assessing gross motor performance of children and adolescents with CP.
https://onlinelibrary.wiley.com/doi/10.1111/dmcn.16042
Professor Gareth Baynam is a globally recognised clinical geneticist, researcher, and advocate for rare diseases. He is the Director of the Rare Care Centre at Perth Children's Hospital and the Head of the Western Australian Register of Developmental Anomalies.
With a career dedicated to improving the diagnosis, management, and care of individuals with rare and genetic conditions, he has been at the forefront of integrating cutting-edge technologies such as genomics, artificial intelligence, and precision medicine into healthcare.
Professor Baynam is also a leader in Indigenous health initiatives, championing equitable access to rare disease diagnostics and treatment. Through his work with organizations such as the Global Commission to End the Diagnostic Odyssey for Children with a Rare Disease and the European Rare Diseases Research Alliance (ERDERA), he continues to drive global collaborations and innovations that aim to transform rare disease care.
Spinal manipulation and mobilisation in paediatrics - an international evidence-based position statement for physiotherapistsAnita R Gross, Kenneth A Olson, Jan Pool, Annalie Basson, Derek Clewley, Jenifer L Dice, Nikki Milne
- PMID: 38855972
- PMCID: PMC11216248
- DOI: 10.1080/10669817.2024.2332026
Abstract
Introduction: An international taskforce of clinician-scientists was formed by specialty groups of World Physiotherapy - International Federation of Orthopaedic Manipulative Physical Therapists (IFOMPT) & International Organisation of Physiotherapists in Paediatrics (IOPTP) - to develop evidence-based practice position statements directing physiotherapists clinical reasoning for the safe and effective use of spinal manipulation and mobilisation for paediatric populations (<18 years) with varied musculoskeletal or non-musculoskeletal conditions.
Method: A three-stage guideline process using validated methodology was completed: 1. Literature review stage (one scoping review, two reviews exploring psychometric properties); 2. Delphi stage (one 3-Round expert Delphi survey); and 3. Refinement stage (evidence-to-decision summative analysis, position statement development, evidence gap map analyses, and multilayer review processes).
Results: Evidence-based practice position statements were developed to guide the appropriate use of spinal manipulation and mobilisation for paediatric populations. All were predicated on clinicians using biopsychosocial clinical reasoning to determine when the intervention is appropriate.1. It is not recommended to perform:• Spinal manipulation and mobilisation on infants.• Cervical and lumbar spine manipulation on children.•Spinal manipulation and mobilisation on infants, children, and adolescents for non-musculoskeletal paediatric conditions including asthma, attention deficit hyperactivity disorder, autism spectrum disorder, breastfeeding difficulties, cerebral palsy, infantile colic, nocturnal enuresis, and otitis media.2. It may be appropriate to treat musculoskeletal conditions including spinal mobility impairments associated with neck-back pain and neck pain with headache utilising:• Spinal mobilisation and manipulation on adolescents;• Spinal mobilisation on children; or• Thoracic manipulation on children for neck-back pain only.3. No high certainty evidence to recommend these interventions was available.Reports of mild to severe harms exist; however, risk rates could not be determined.
Conclusion: Specific directives to guide physiotherapists' clinical reasoning on the appropriate use of spinal manipulation or mobilisation were identified. Future research should focus on trials for priority conditions (neck-back pain) in children and adolescents, psychometric properties of key outcome measures, knowledge translation, and harms.
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 ProfessorAnita 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 reviewStacey 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 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! 😉
Presidential Guest Lecture: Moving to think, thinking to move.
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! 😉
What are health professional's responsibilities? A candid discussion about setting a new standard.
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! 😉
PhD Paper
The Circus Project: code signing a circus based intervention to enhance physical activity participation for preschool aged children born preterm.
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! 😉
Free Paper, Measure and Outcomes.
A core outcome set of chronic pain assessment tools for young people with cerebral palsy: consensus from key stakeholders.
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! 😉
Alicia Spittle Keynote (Dinah Reddihough Oration).
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! 😉
Playground Accessibility - the Participate app:
Co-designing a mobile application to improve participation opportunities for children with neurodisabilities.
Functional mobility matters
Embedding motor learning interventions using
dynamic robotic technology.
Cerebral palsy in low and middle income countries: situation analysis, rehabilitation status, livelihood-based intervention and social business model.
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! 😉
PhD Platform:
Innovative Evidence-Based Assessment and Treatment of Oropharyngeal Dysphagia and Communication Disorders in Infants and Young Children at High Risk of Cerebral Palsy.
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! 😉
Health Equity
Knowledge translation of evidence-based interventions to improve functional mobility in a low to middle income country.
Impact of ENVISAGE-Families workshops on outcomes for caregivers of children with neurodisabilities – 6 and 12 months follow up.
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! 😉
Free Paper Best practice interventions.
Parent's experiences of early intervention for infants with or at risk of cerebral palsy: a qualitative systematic review.
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! 😉
PhD Paper: Participation experiences of young people with cerebral palsy.
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! 😉
Walking endurance with a supportive stepping device, in children and young adolescents with cerebral palsy: a clinical audit.
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! 😉
Free Paper Best Practice Interventions: Harnessing Neuroplasticity to Improve Developmental Outcomes in Infants with Cerebral Palsy: the GAME trial.
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! 😉
Free Paper Orthopaedics, muscle and bone health.
Percutaneous tendon lengthening and Selective Percutaneous Myofascial Lengthening in Children with Cerebral Palsy: Establishing surgical indications using the Delphi method.
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! 😉
Power of One: Learning Health Care Systems and Machine Learning.
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! 😉
Independent mobility, communication and computer access in severe cerebral palsy: the current evidence to support new technologies with alternative interfaces.
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! 😉
Free Paper, Measurement and Outcomes: Estimating the difficulty level of motor practice during physical therapy sessions in young children with cerebral palsy and Motor error during physical therapy in young children with cerebral palsy.
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! 😉
The epidemiology, prevention, and control of malnutrition among children with cerebral palsy in low- and middle-income countries.
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! 😉
Free Paper Adults, Mental Health
National Disability Insurance Scheme: an evaluation of plan size, access and use by people with cerebral palsy.
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! 😉
It's conference season!
Fresh from our exploits at the European Academy of Childhood-onset Disabilities (EACD) conference for 2024 in Bruges Belgium, this week we are off to the AusACPDM (The Australasian Academy of Cerebral Palsy and Developmental Medicine) Conference in Cairns, North Queensland, Australia.
We're proud of our collaboration with the AusACPDM and much like our continued partnership with the EACD in 2023 and 2024 (and in 2025!), we're looking forward to giving you a behind the scenes look, with untold stories and interviews with some of the finest researchers in the world.
Also... we have a special announcement to make during the pod this week - so stay tuned and join us for an incredible week and if you are attending the conference, stop by the booth in the main exhibition hall and say hello - we'd love to meet you!
Reflections on Participation at Home, As Self-Reported by Young People with Cerebral PalsyJacinta R Quartermaine, Tanya A Rose, Megan L Auld, Leanne M Johnston
Abstract
This study explored the home-based participation of young people with cerebral palsy (CP) and described factors that make participation easier or harder. Fifteen young people with CP aged 15 to 26 years provided written reflections, photographs, or videos about their home-based participation experiences.
Data were analysed using reflexive thematic analysis. Self-reported reflections were grouped inductively into 129 codes, then 20 subthemes and 5 themes which emphasized CP characteristics, thoughts, emotions, equipment, environment, supports, and inclusion as important factors influencing home-based participation.
Young people with CP largely described the home environment as an inclusive place to participate.
Keywords: Cerebral palsy; home; participation; qualitative thematic analysis; young people.
EACD 2024 has been a symphonic masterpiece of a conference - see what we did there! 😉
This episode is our summary of the EACD conference for 2024, here in Bruges/Brugge Belgium. We take a look at the topics of conversation both here on the pod and throughout the conference, dinners, breakfasts, impromptu catchups and more.
We hope you enjoy - and we'll see you at EACD conference 2025!
Day 2 of EACD 2024.
An interview with Professor Bernard Dan.
Producer Ed apologises for the audio quality as the backstage room caused a lot of (audio) reflections that resulted in the more than usual echo in the podcast recordings!
Day 2 of EACD 2024.
An interview with Dr Adam Shortland and Mr Martin Gough.
Detailed show notes to come!
Producer Ed apologises for the audio quality as the backstage room caused a lot of (audio) reflections that resulted in the more than usual echo in the podcast recordings!
Day 2 of EACD 2024.
An interview with Dr Sarah McIntyre and Dr Gija Rackauskaite.
Detailed show notes to come!
Producer Ed apologises for the audio quality as the backstage room caused a lot of (audio) reflections that resulted in the more than usual echo in the podcast recordings!
Day 2 of EACD 2024.
An interview with Dr Marco Konings.
Detailed show notes to come!
Producer Ed apologises for the audio quality as the backstage room caused a lot of (audio) reflections that resulted in the more than usual echo in the podcast recordings!
Day 2 of EACD 2024.
An interview with Associate Professor Brian Hoare and Dr Atefeh Taghizadeh.
Detailed show notes to come!
Producer Ed apologises for the audio quality as the backstage room caused a lot of (audio) reflections that resulted in the more than usual echo in the podcast recordings!
Day 2 of EACD 2024.
An interview with Dr Sarah Reedman.
Detailed show notes to come!
Producer Ed apologises for the audio quality as the backstage room caused a lot of (audio) reflections that resulted in the more than usual echo in the podcast recordings!
Day 2 of EACD 2024.
An interview with Dr Charlie Fairhurst.
Detailed show notes to come!
Producer Ed apologises for the audio quality as the backstage room caused a lot of (audio) reflections that resulted in the more than usual echo in the podcast recordings!
Day 2 of EACD 2024.
An interview with Dr Nofar Ben Itzhak.
Detailed show notes to come!
Producer Ed apologises for the audio quality as the backstage room caused a lot of (audio) reflections that resulted in the more than usual echo in the podcast recordings!
Day 2 at EACD 2024.
An interview with Dr Richard L Lieber.
Detailed show notes to come!
Producer Ed apologises for the audio quality as the backstage room caused a lot of (audio) reflections that resulted in the more than usual echo in the podcast recordings!
Day 2 of EACD 2024 - An interview with Professor Kate Himmelmann!
Detailed show notes to come!
Producer Ed apologises for the audio quality as the backstage room caused a lot of (audio) reflections that resulted in the more than usual echo in the podcast recordings!
Day 2 of EACD 2024 - An interview with Natasha Bear PhD candidate!
Detailed show notes to come!
Producer Ed apologises for the audio quality as the backstage room caused a lot of (audio) reflections that resulted in the more than usual echo in the podcast recordings!
EACD 2024 - an interview with Dr Anina Ritterband-Rosenbaum!
Detailed show notes to come.
Producer Ed apologises for the audio quality as the backstage room caused a lot of (audio) reflections that resulted in the more than usual echo in the podcast recordings!
Day 2 of EACD 2024 - an interview with Deepti Chugh!
Detailed show notes to come.
Producer Ed apologises for the audio quality as the backstage room caused a lot of (audio) reflections that resulted in the more than usual echo in the podcast recordings!
An interview with all three keynote speakers from the 2nd keynote session of Day 1 of EACD 2024.
Prof Christophe Matthys, Prof Phillip L Pearl, Dr Angels Garcia Cazorla
Detailed show notes to come!
Producer Ed apologises for the audio quality as the backstage room caused a lot of (audio) reflections that resulted in the more than usual echo in the podcast recordings!
A special interview with a trio of Keynote speakers - kick starting EACD 2024!
Detailed show notes to come!
An interview with Dr Ginny Paleg and Professor Roslyn Livingstone.
Detailed show notes to come!
COCHRANE REVIEW: EARLY DEVELOPMENTAL INTERVENTION PROGRAMMES PROVIDED POST HOSPITAL DISCHARGE TO PREVENT MOTOR AND COGNITIVE IMPAIRMENT IN PRETERM INFANTS.
Jane Orton, Lex W Doyle, Tanya Tripathi, Roslyn Boyd, Peter J Anderson, Alicia Spittle
Early developmental intervention programmes for preterm infants probably improve cognitive and motor outcomes during infancy (low‐certainty evidence) while, at preschool age, intervention is shown to improve cognitive outcomes (high‐certainty evidence).
Considerable heterogeneity exists between studies due to variations in aspects of the intervention programmes, the population and outcome measures utilised. Further research is needed to determine which types of early developmental interventions are most effective in improving cognitive and motor outcomes, and in particular to discern whether there is a longer‐term benefit from these programmes.
https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD005495.pub5/full
Kindy Moves: the feasibility of an intensive interdisciplinary programme on goal and motor outcomes for preschool-aged children with neurodisabilities requiring daily equipment and physical assistanceMatthew Haddon, Loren West, Catherine Elliott, Corrin Walmsley, Jane Valentine, Natasha Bear, Dayna Pool, Healthy Strides Research Advisory Council
Abstract
Objectives: To determine the feasibility of an intensive interdisciplinary programme in improving goal and motor outcomes for preschool-aged children with non-progressive neurodisabilities. The primary hypothesis was that the intervention would be feasible.
Design: A single group feasibility study.
Setting: An Australian paediatric community therapy provider.
Participants: Forty children were recruited. Inclusion criteria were age 2-5 years with a non-progressive neurodisability, Gross Motor Function Classification System (GMFCS) levels III-V or equivalent, and goals relating to mobility, communication and upper limb function. Exclusion criteria included orthopaedic surgery in the past 6 months, unstable hip subluxation, uncontrolled seizure disorder or treadmill training in the past month.
Intervention: A goal-directed programme of three 2-hour sessions per week for 4 weeks (24 hours total). This consisted of treadmill and overground walking, communication practice, and upper limb tasks tailored by an interdisciplinary team.
Primary and secondary outcome measures: Limited-efficacy measures from preintervention (T1) to postintervention (T2) and 4-week follow-up (T3) included the Goal Attainment Scaling (GAS), Canadian Occupational Performance Measure (COPM), Gross Motor Function Measure (GMFM-66) and 10-Metre Walk Test (10MWT). Acceptability, demand, implementation and practicality were also explored.
Results: There were improvements at T2 compared with T1 for all limited-efficacy measures. The GAS improved at T2 (mean difference (MD) 27.7, 95% CI 25.8 to 29.5) as well as COPM performance (MD 3.2, 95% CI 2.8 to 3.6) and satisfaction (MD 3.3, 95% CI 2.8 to 3.8). The GMFM-66 (MD 2.3, 95% CI 1.0 to 3.5) and 10MWT (median difference -2.3, 95% CI -28.8 to 0.0) improved at T2. Almost all improvements were maintained at T3. Other feasibility components were also demonstrated. There were no adverse events.
Conclusions: An intensive interdisciplinary programme is feasible in improving goal and motor outcomes for preschool children with neurodisabilities (GMFCS III-V or equivalent). A randomised controlled trial is warranted to establish efficacy.
Trial registration number: ACTRN12619000064101.
Keywords: Clinical trials; Developmental neurology & neurodisability; Neurological injury.
Down syndrome or Rett syndrome in the family: Parental reflections on sibling experienceCaitlin Gray, Helen Leonard, Kingsley Wong, Sally Reed, Kate Schmidt, Rachel Skoss, Jianghong Li, Alison Salt, Jenny Bourke, Emma J. Glasson
Abstract
Background: Siblings of children with intellectual disability have unique family experiences, varying by type of disability.
Methods: Parents of children with Down syndrome (156) or with Rett syndrome (149) completed questionnaires relating to sibling advantages and disadvantages, experiences of holidays and recreation, and perceived availability of parental time. Qualitative responses were analysed using thematic analysis.
Results: Positive personality traits, an optimistic outlook, enhanced skills, and rich relationships were strong and consistent parental perceptions for siblings in both disability groups. Parents of children with Rett syndrome were more likely to rank themselves lower on time availability, and to report sibling difficulties with social engagement and family holidays.
Conclusions: Parental responses appeared to be influenced by disability type, and reflective of child capabilities. Perceptions of sibling experience should be supplemented by data collected directly from siblings to fully understand their unique perspective, and the ways in which their experiences could be enhanced.
MYTHS AND FACTS ON HIPS IN CHILDREN WITH CEREBRAL PALSY
Reflections on this episode:
Professor Susan Stott is a Professor of paediatric orthopaedic surgery at the University of Auckland, New Zealand and paediatric orthopedic surgeon at Starship Children’s Hospital in New Zealand.
Professor Stott was the second President of the AusACPDM and was the only New Zealand investigator on the NHMRC Centre for Research Excellence: Australasian Cerebral Palsy Clinical Trials Network hosted at University of Queensland.
She is the clinical lead of the New Zealand CP register and on the reference group of the newly formed Neurodevelopmental Network, under the auspices of the Paediatric Society of New Zealand. She therefore has the ability to translate key research findings into clinical practice through strong alliances with key stake-holders within the health sector.
In terms of general citation indices, her work has been cited 1546 times and h index 34. She has received the Gillies medal from the NZ Orthopaedic Assoc. for best paediatric orthopaedic research paper in 1998 and again in 2008. In 2018, she was the AusACPDM Transformative Practice Award Winner and also received the prestigious Presidential Award, New Zealand Orthopaedic Association
Prioritized strategies to improve diagnosis and early management of cerebral palsy for both Māori and non-Māori familiesSian A Williams, Ivana Nakarada-Kordic, Anna H Mackey, Stephen Reay, N Susan Stott
Abstract
Aim: To identify prioritized strategies to support improvements in early health service delivery around the diagnosis and management of cerebral palsy (CP) for both Māori and non-Māori individuals.
Method: Using a participatory approach, health care professionals and the parents of children with CP attended co-design workshops on the topic of early diagnosis and management of CP. Health design researchers facilitated two 'discovery' (sharing experiences and ideas) and two 'prototyping' (solution-focused) workshops in Aotearoa, New Zealand. A Māori health service worker co-facilitated workshops for Māori families.
Results: Between 7 and 13 participants (14 health care professionals, 12 parents of children with CP across all functional levels) attended each workshop. The discovery workshops revealed powerful stories about early experiences and needs within clinician-family communication and service provision. The prototyping workshops revealed priorities around communication, and when, what, and how information is provided to families; recommendations were co-created around what should be prioritized within a resource to aid health care navigation.
Interpretation: There is a critical need for improved communication, support, and guidance, as well as education, for families navigating their child with CP through the health care system. Further input from families and health care professionals partnering together will continue to guide strategies to improve health care service delivery using experiences as a mechanism for change.
Early otitis media puts children at risk for later auditory and language deficits
Abstract
Background: Otitis media is a common disorder of early childhood suspected of hindering auditory and language development, but evidence regarding these effects has been contradictory. To examine potential sources of these contradictory past results and explore in more detail the effects of early otitis media on auditory and language development, three specific hypotheses were tested: (1) Variability in children's general attention could influence results, especially for measures of auditory functioning, leading to spurious findings of group differences; (2) Different language skills may be differentially affected, evoking different effects across studies depending on skills assessed; and (3) Different mechanisms might account for the effects of otitis media on acquisition of different language skills, a finding that would affect treatment choices.
Method: Children 5-10 years old participated: 49 with and 68 without significant histories of otitis media. The auditory function examined was temporal modulation detection, using games designed to maintain children's attention; two additional measures assessed that attention. Measures of lexical knowledge and phonological sensitivity served as the language measures.
Results: Sustained attention was demonstrated equally across groups of children with and without histories of otitis media. Children with histories of otitis media performed more poorly than peers without those histories on the auditory measure and on both sets of language measures, but effects were stronger for phonological sensitivity than lexical knowledge. Deficits in temporal modulation detection accounted for variability in phonological sensitivity, but not in lexical knowledge.
Conclusion: When experimental factors are tightly controlled, evidence emerges showing effects of otitis media early in life on both auditory and language development. Mechanism of effects on language acquisition appear to involve both delayed auditory development and diminished access to the ambient language.
Keywords: Children; Language; Otitis media; Temporal processing.
A family-tailored early motor intervention (EMI-Heart) for infants with complex congenital heart disease: study protocol for a feasibility RCTElena Mitteregger, Tineke Dirks, Manuela Theiler, Oliver Kretschmar, Beatrice Latal
**Abstract
Background:** Children with congenital heart disease (CHD) undergoing open-heart surgery are at risk for developmental impairments with motor delay manifesting first and contributing to parental concerns. Only a few interventional studies aim to improve neuromotor development in infants with CHD with inconclusive results. We thus developed a family-tailored early motor intervention (EMI-Heart), which aims to promote motor development and family well-being in the first year of life after open-heart surgery. The primary aim described in this protocol is to evaluate feasibility of EMI-Heart. The secondary aim is to describe the difference between the intervention and control group in motor outcomes and family well-being at baseline, post-treatment, and follow-up.
Methods: This prospective, parallel single-center feasibility randomized controlled trial (RCT) will compare EMI-Heart with standard of care in infants with complex CHD. Sixteen infants and their families, randomly allocated to EMI-Heart or the control group, will participate within the first 5 months of life. Infants assigned to EMI-Heart will receive early motor intervention for 3 months. The intervention's key is to promote infants' postural control to enhance motor development and partnering with parents to encourage family well-being. Feasibility outcomes will be (a) clinical recruitment rate and percentage of families completing EMI-Heart, (b) average duration and number of sessions, and (c) acceptability of EMI-Heart using a parental questionnaire post-treatment, and descriptive acceptability of EMI-Heart to the pediatric physiotherapist. Secondary outcomes of the intervention and control group will be infants' motor outcomes and questionnaires assessing family well-being at 3-5 months (baseline), at 6-8 months (post-treatment), and at 12 months of age (follow-up). We will evaluate feasibility using descriptive statistics. Non-parametric statistical analysis of secondary outcomes will assess differences between the groups at baseline, post-treatment, and follow-up.
Discussion: This feasibility RCT will provide information about a newly developed family-tailored early motor intervention in infants with complex CHD. The RCT design will provide a foundation for a future large-scale interventional trial for infants with CHD after open-heart surgery.
Keywords: Congenital heart disease; Early motor intervention; Family well-being; Family-tailored intervention; Neuromotor development; Open-heart surgery; Parental and child health-related quality of life; Physiotherapy.
EMERGENCE OF THE CORTICAL ENCODING OF PHONETIC FEATURES IN THE FIRST YEAR OF LIFE
Giovanni M. Di Liberto, Adam Attaheri, Giorgia Cantisani, Richard B. Reilly, Áine Ní Choisdealbha, Sinead Rocha, Perrine Brusini & Usha Goswami
Nature Communications volume 14, Article number: 7789 (2023)
Abstract
Even prior to producing their first words, infants are developing a sophisticated speech processing system, with robust word recognition present by 4–6 months of age.
These emergent linguistic skills, observed with behavioural investigations, are likely to rely on increasingly sophisticated neural underpinnings. The infant brain is known to robustly track the speech envelope, however previous cortical tracking studies were unable to demonstrate the presence of phonetic feature encoding.
Here we utilise temporal response functions computed from electrophysiological responses to nursery rhymes to investigate the cortical encoding of phonetic features in a longitudinal cohort of infants when aged 4, 7 and 11 months, as well as adults.
The analyses reveal an increasingly detailed and acoustically invariant phonetic encoding emerging over the first year of life, providing neurophysiological evidence that the pre-verbal human cortex learns phonetic categories. By contrast, we found no credible evidence for age-related increases in cortical tracking of the acoustic spectrogram.
“Chemical analysis of fresh and aged Australian e-cigarette liquids”
published in the Medical Journal of Australia
“Electronic cigarette usage patterns and perceptions in adult Australians”
published in Toxics in 2023.
Chemical analysis of fresh and aged Australian e-cigarette liquidsAlexander Larcombe, Sebastien Allard, Paul Pringle, Ryan Mead-Hunter, Natalie Anderson, Benjamin Mullins
Affiliations expand
- PMID: 34528266
- DOI: 10.5694/mja2.51280
Abstract
Objectives: To assess the chemical composition of electronic cigarette liquids (e-liquids) sold in Australia, in both their fresh and aged forms.
Design, setting: Gas chromatography-mass spectrometry analysis of commercial e-liquids sold in Australia (online and physical stores).
Main outcome measures: Chemical composition of 65 Australian e-liquids - excipients/solvents, flavouring chemicals, other known e-liquid constituents (including nicotine), and polycyclic aromatic hydrocarbons - before and after an accelerated ageing process that simulated the effects of vaping.
Results: The measured levels of propylene glycol and glycerol often diverged from those recorded on the e-liquid label. All e-liquids contained one or more potentially harmful chemicals, including benzaldehyde, menthol, trans-cinnamaldehyde, and polycyclic aromatic hydrocarbons. Nicotine or nicotyrine were detected in a small proportion of e-liquids at extremely low concentrations.
Conclusions: Australian e-liquids contain a wide variety of chemicals for which information on inhalation toxicity is not available. Further analyses are required to assess the potential long term effects of e-cigarette use on health.
Electronic Cigarette Usage Patterns and PErceptions in Audult Australians
Abstract (abbreviated)
In this study, we screened 2217 adult Australians with the aim of assessing these questions in a sample of current or former e-cigarette users. A total of 505 out of 2217 respondents were current or former e-cigarette users, with only these respondents completing the full survey.
Key findings of this survey included the high proportion of respondents who indicated they were currently using e-cigarettes (307 out of 2217 = 13.8%), and the high proportion of current e-cigarette users that were also smokers (74.6%). The majority of respondents used e-liquids containing nicotine (70.3%), despite it being illegal in Australia without a prescription, and the majority bought their devices and liquids in Australia (65.7%).
A significant proportion of current e-cigarette users (30.6%) thought that e-cigarettes were completely safe to use long-term, although in general, there was a large amount of uncertainty/ambivalence with respect to perceptions of e-cigarette safety and efficacy as smoking cessation tools.
This study shows that e-cigarette use is common in Australia, and that appropriate dissemination of unbiased research findings on their safety and efficacy in smoking cessation is urgently required.
Parenting Practices May Buffer the Impact of Adversity on Epigenetic Age Acceleration Among Young Children With Developmental DelaysAlexandra D W Sullivan, Anne K Bozack, Andres Cardenas, Jonathan S Comer, Daniel M Bagner, Rex Forehand, Justin Parent
Affiliations expand
- PMID: 37733001
- PMCID: PMC10626625 (available on 2024-09-21)
- DOI: 10.1177/09567976231194221
Abstract
This study examined whether children exposed to adversity would exhibit lower epigenetic age acceleration in the context of improved parenting. Children with developmental delays and externalizing behavior problems (N = 62; Mage = 36.26 months; 70.97% boys, 29.03% girls; 71% Latinx, 22.6% Black) were drawn from a larger randomized controlled trial (RCT), which randomized them to receive Internet-delivered parent-child interaction therapy (iPCIT; n = 30) or community referrals as usual (RAU; n = 32).
Epigenetic age acceleration was estimated with the pediatric buccal epigenetic clock, using saliva.
Adversity was assessed using parent, family, and neighborhood-level cumulative-risk indicators.
Adversity interacted with Time 2 (T2) observations of positive and negative-parenting practices to predict epigenetic age acceleration 1.5 years later, regardless of treatment assignment. Children exposed to more adversity displayed lower epigenetic age acceleration when parents evidenced increased positive (b = -0.15, p = .001) and decreased negative (b = -0.12, p = .01) parenting practices.
Implementation of an Integrated Knowledge to Action strategy can be used to implement the clinical guidelines for the early detection of cerebral palsy in a state-wide early intervention service and the impact of social determinants of health on service engagement.
In this retrospective longitudinal cohort study that was completed in Western Australia’s tertiary paediatric early intervention service, knowledge translation strategies which included consumer perspectives, clinician training and communities of practices guided implementation.
With referral number and age, delivery of early detection and intervention following the implementation of the guidelines, it was found that the implementation strategies were effective in reducing referral age with improved delivery of early detection assessments.
This has some very important implications on both short and long term health outcomes.
Sue Anne Davidson is the Manager of Kids Rehab WA at the Perth Children’s Hospital and a PhD candidate at Curtin University. She has over 15 years experience in the design, implementation, and evaluation of tertiary paediatric rehabilitation services at PCH.Sue-Anne’s experience in clinical, management and leadership has enabled her to lead improvements within the tertiary hospital setting to improve accessible, equitable and sustainable services for children and adolescents in WA.
She has served on several committees including the Disability Health Network’s Executive Advisory group and the WA Sustainable Health Review Clinical Reference Group. She is now the Co-Chair of the Child and Adolescent Health Service Disability Access and Inclusion Committee.
Sue-Anne has a Masters in Health Administration and is a PhD candidate with her studies focusing on the development of a state-wide early detection network for children at high risk of CP and neurodevelopmental disability, linked to national and international best practice models.
Including a relationship-focus in paediatric occupational therapy interventions: Introducing the PAIR Model
The importance of parent-child relationships for child developmental outcomes suggests a need to incorporate a relationship focus into early intervention programs for children with developmental delays.
Nevertheless, confusion exists about the definition and application of relationship-focussed interventions, and occupational therapists remain more developmentally- and child-focussed.
There is a need to operationalize relationship-focussed interventions to make these approaches clinically accessible. This report defines, and provides a rationale for, including parent-child relationship-focussed interventions in early childhood occupational therapy interventions.
A new conceptual model, the “Phased Approach to Incorporating a Relationship-focus” (PAIR), is detailed for consideration in pediatric therapy settings. The PAIR model can support professional education, inform practice, and guide future research regarding relationship-focussed interventions.
Research is needed to test the usefulness of this model in occupational therapy practice.
Building a clinical researcher’s career - lessons from a mentor
Professor Elliott is the Director of Research at Telethon Kids Institute, the Chair of Kids Rehab at Child Adolescent Health Services (CAHS) and a Professor in the School of Allied Health at Curtin University.
The potential of cell therapies for cerebral palsy: where are we today?Iona Novak, Madison Cb Paton, Alexandra R Griffin, Michelle Jackman, Remy K Blatch-Williams, Megan Finch-Edmondson
- PMID: 37428111
- DOI: 10.1080/14737175.2023.2234642
No abstract available
Keywords: Cerebral palsy; efficacy; inflammation; mesenchymal stem cells; safety; stem cells; umbilical cord blood.
Professor Novak is the Cerebral Palsy Alliance Chair of Allied Health, and co-founder of the Cerebral Palsy Alliance Research Institute, affiliated with the Brain and Mind Centre and Faculty of Medicine and Health at The University of Sydney.
Live from the Small Steps | BIG Impact 2023 Conference!
The art of Science Communication.
Season 3 Wrap Up
Final episode of the season?!?
As Ash and Dayna reflect on this incredible year, we pull together some key themes of the episodes and the ever so wonderful and brilliant guests we have had on the show. We are so grateful for all of the researchers who so generously gave their time to help spread the word on the current state of science in the field. We have learnt so much and we hope you have had some great takeaways too!
In true Ash style, the qualitative researcher in her couldn’t help but to carry out a thematic analysis of the episodes in 2023. We love that she did that though - you can see the transdiagnostic approach really set in because of the common themes that run through so many different areas. We truly believe that if you can grasp all of the themes of the episodes this year, you can so easily translate this knowledge into your practice - staying up to date with the latest and waiting ever so hopefully for more to come.
In this episode, we talk about the powerhouses of the industry who joined us on the show. They are thought provokers for sure - titans of the industry with years of experience, extensive global collaborations and wisdom to impart to clinicians and researchers alike. These researchers include Professor Peter Rosenbaum, Professor Diane Damiano, Professor Andrew Whitehouse, Professor Mark Belgrove and Professor Laurent Servais and of course some of our returning guests which include Professor Ben Jackson, Dr Bhooma Aravamuthan, Dr Ros Ward and Ginny Paleg just to name a few. All of their messaging was around the importance of the ‘F-words’!
We as health professionals need to “be humble” as Bhooma so eloquently described and the real importance of being person centred was a common theme. Starting the season with Emily Prior and later Connor Johnstone truly reinforced this - both incredible young people with lived experience. It always comes down to the consumers and what a compelling reason to bring forth evidence based interventions and approaches. Their lives matter, their dreams matter - and again, the ‘F-words’ framework brings that home.
We loved our conversations with other thought provokers such as Associate Professor Daniel Navon regarding the sociological take on genetic testing (who asked us more questions then we of him!) and most recently Dr Jessica Stokes-Parish on the world of misinformation, disinformation and the value of debunking! (remember the CRABs mnemonic!)
Then there was the whole theme of brain activation and mobility - we loved talking about the functional MRI results with Dr Yannick Bleyenhueff and that self-initiation is vital! More than just the talk about dosage and the number of hours children engage in therapy - it is about ensuring that the right ingredients are in the intervention. This led nicely into a little series with Andrina Sabet, Dr Heather Feldner and Dr Sam Logan on mobility as a human right. For Dayna, as a clinician, this whole area was incredibly exciting. We now have these papers to reference and use as a resource when we have to advocate for change.
Then we just talked about our highlights and what a highlight reel too! Going international and bringing the podcast to EACD in Slovenia was an amazing experience. We loved meeting so many people and the opportunity to help bring their work into the broader community.
Also, our very first Minister visit with the Honourable Bill Shorten was a highlight for sure. The clinic and our studio was a hive of activity and it was so encouraging to hear the Minister describe the value of evidence based practice and that it is be the way forward for a sustainable scheme.
That was 2023! We are so excited for what 2024 holds! We look forward to meeting more of you at EACD in Bruge and AusACPDM in Cairns in 2024. Have a wonderful holiday season and we will talk to you again soon!
Navigating the Credibility of Web-Based Information During the COVID-19 Pandemic: Using Mnemonics to Empower the Public to Spot Red Flags in Health Information on the InternetJessica Stokes-Parish
Free PMC article
Abstract
Misinformation creates challenges for the general public in differentiating truth from fiction in web-based content. During the COVID-19 pandemic, this issue has been amplified due to high volumes of news and changing information. Evidence on misinformation largely focuses on understanding the psychology of misinformation and debunking strategies but neglects to explore critical thinking education for the general public. This viewpoint outlines the science of misinformation and the current resources available to the public.
This paper describes the development and theoretical underpinnings of a mnemonic (Conflict of Interest, References, Author, Buzzwords, Scope of Practice [CRABS]) for identifying misinformation in web-based health content. Leveraging evidence-based educational strategies may be a promising approach for empowering the public with the confidence needed to differentiate truth from fiction in an infodemic.
Keywords: COVID-19; critical appraisal; digital literacy; health literacy; infodemic; infodemiology; misinformation; online health; science communication; social media.
Bivalent Prefusion F Vaccine in Pregnancy to Prevent RSV Illness in Infants
List of authors.
- Beate Kampmann, M.D., Ph.D.,
- Shabir A. Madhi, M.B., B.Ch., Ph.D.,
- Iona Munjal, M.D.,
- Eric A.F. Simões, M.D.,
- Barbara A. Pahud, M.D., M.P.H.,
- Conrado Llapur, M.D.,
- Jeffrey Baker, M.D.,
- Gonzalo Pérez Marc, M.D.,
- David Radley, M.S.,
- Emma Shittu, Ph.D.,
- Julia Glanternik, M.D.,
- Hasra Snaggs, M.D.,
- et al.,
- for the MATISSE Study Group*
Abstract
BACKGROUND
Whether vaccination during pregnancy could reduce the burden of respiratory syncytial virus (RSV)–associated lower respiratory tract illness in newborns and infants is uncertain.
METHODS
In this phase 3, double-blind trial conducted in 18 countries, we randomly assigned, in a 1:1 ratio, pregnant women at 24 through 36 weeks’ gestation to receive a single intramuscular injection of 120 μg of a bivalent RSV prefusion F protein–based (RSVpreF) vaccine or placebo. The two primary efficacy end points were medically attended severe RSV-associated lower respiratory tract illness and medically attended RSV-associated lower respiratory tract illness in infants within 90, 120, 150, and 180 days after birth. A lower boundary of the confidence interval for vaccine efficacy (99.5% confidence interval [CI] at 90 days; 97.58% CI at later intervals) greater than 20% was considered to meet the success criterion for vaccine efficacy with respect to the primary end points.
RESULTS
At this prespecified interim analysis, the success criterion for vaccine efficacy was met with respect to one primary end point. Overall, 3682 maternal participants received vaccine and 3676 received placebo; 3570 and 3558 infants, respectively, were evaluated. Medically attended severe lower respiratory tract illness occurred within 90 days after birth in 6 infants of women in the vaccine group and 33 infants of women in the placebo group (vaccine efficacy, 81.8%; 99.5% CI, 40.6 to 96.3); 19 cases and 62 cases, respectively, occurred within 180 days after birth (vaccine efficacy, 69.4%; 97.58% CI, 44.3 to 84.1).
Medically attended RSV-associated lower respiratory tract illness occurred within 90 days after birth in 24 infants of women in the vaccine group and 56 infants of women in the placebo group (vaccine efficacy, 57.1%; 99.5% CI, 14.7 to 79.8); these results did not meet the statistical success criterion. No safety signals were detected in maternal participants or in infants and toddlers up to 24 months of age. The incidences of adverse events reported within 1 month after injection or within 1 month after birth were similar in the vaccine group (13.8% of women and 37.1% of infants) and the placebo group (13.1% and 34.5%, respectively).
CONCLUSIONS
RSVpreF vaccine administered during pregnancy was effective against medically attended severe RSV-associated lower respiratory tract illness in infants, and no safety concerns were identified.
F-words and early intervention ingredients for non-ambulant children with cerebral palsy: A scoping reviewAna Carolina De Campos, Álvaro Hidalgo-Robles, Egmar Longo, Claire Shrader, Ginny Paleg
Abstract
Aim: To explore the ingredients of early interventions provided to young children with cerebral palsy (CP) who are classified in Gross Motor Function Classification System (GMFCS) levels IV and V, and to identify the 'F-words' addressed by the interventions.
Method: Searches were completed in four electronic databases. Inclusion criteria were the original experimental studies that fitted the following PCC components: population, young children (aged 0-5 years, at least 30% of the sample) with CP and significant motor impairment (GMFCS levels IV or V, at least 30% of the sample); concept, non-surgical and non-pharmacological early intervention services measuring outcomes from any of the International Classification of Functioning, Disability and Health domains; and context, studies published from 2001 to 2021, from all settings and not limited to any specific geographical location.
Results: Eighty-seven papers were included for review, with qualitative (n = 3), mixed-methods (n = 4), quantitative descriptive (n = 22), quantitative non-randomized (n = 39), and quantitative randomized (n = 19) designs. Fitness (n = 59), family (n = 46), and functioning (n = 33) ingredients were addressed by most experimental studies, whereas studies on fun (n = 6), friends (n = 5), and future (n = 14) were scarce. Several other factors (n = 55) related to the environment, for example, service provision, professional training, therapy dose, and environmental modifications, were also relevant.
Interpretation: Many studies positively supported formal parent training and use of assistive technology to promote several F-words. A menu of intervention ingredients was provided, with suggestions for future research, to incorporate them into a real context within the family and clinical practice.
A roundtable discussion about the clinical application of Mobility as a Human Right!
Mobility is a fundamental human right and is supported by the United Nations and the ON Time Mobility framework.
W Logan, Bethany M Sloane, Lisa K Kenyon, Heather A Feldner
PMID: 37232636
PMCID: PMC10215286
DOI: 10.3390/bs13050399
Free PMC article
Abstract
Mobility is a fundamental human right and is supported by the United Nations and the ON Time Mobility framework. The purpose of this study was to understand the effect of a powered mobility intervention on developmental changes of children with cerebral palsy (CP).
This study was a randomized, crossover clinical trial involving 24 children (12-36 months) diagnosed with CP or with high probability of future CP diagnosis based on birth history and current developmental status. Children received the Explorer Mini and a modified ride-on car in randomized order, each for 8 weeks.
The Bayley Scales of Infant and Toddler Development-4th Edition was administered at baseline, mid-study, and end-of-study. Raw change scores were used for analysis.
Total minutes of use per device was categorised as low or high use for analysis based on caregiver-reported driving diaries.
Explorer Mini: The high use group exhibited significantly greater positive change scores compared to the low use group on receptive communication, expressive communication, and gross motor sub scales (p less than 0.05).
Modified ride-on car: No significant differences between low and high use groups. Regardless of device, low use was associated with no significant developmental change and high use was associated with positive developmental changes. Mobility access is critical to maximize the development of children with CP and may be augmented by using powered mobility devices.
Results may have implications for the development of evidence-based guidelines on dosage for powered mobility use.
Keywords: cerebral palsy; disability; mobility; technology.
Powered Mobility Device Use and Developmental Change of Young Children with Cerebral Palsy
Mobility is a fundamental human right and is supported by the United Nations and the ON Time Mobility framework.
The purpose of this study was to understand the effect of a powered mobility intervention on developmental changes of children with cerebral palsy (CP).
This study was a randomized, crossover clinical trial involving 24 children (12-36 months) diagnosed with CP or with high probability of future CP diagnosis based on birth history and current developmental status. Children received the Explorer Mini and a modified ride-on car in randomized order, each for 8 weeks. The Bayley Scales of Infant and Toddler Development-4th Edition was administered at baseline, mid-study, and end-of-study. Raw change scores were used for analysis. Total minutes of use per device was categorized as low or high use for analysis based on caregiver-reported driving diaries.
Explorer Mini: The high use group exhibited significantly greater positive change scores compared to the low use group on receptive communication, expressive communication, and gross motor subscales (p < 0.05).
Modified ride-on car: No significant differences between low and high use groups. Regardless of device, low use was associated with no significant developmental change and high use was associated with positive developmental changes.
Mobility access is critical to maximize the development of children with CP and may be augmented by using powered mobility devices.
Results may have implications for the development of evidence-based guidelines on dosage for powered mobility use.
**ON Time Mobility: Advocating for Mobility Equity
Abstract**
Mobility is a human right. The traditional definition of mobility in physical therapy practice is centered on translocation and, while accurate, is not comprehensive.
In this article, we propose the ON Time Mobility framework: that all children have the right to be mobile throughout their development to explore, engage in relationships, and develop agency to cocreate their lives.
This perspective highlights interconnected principles of timing, urgency, multimodal, frequency, and sociability to begin discussions on supporting the right to hours of active mobility each day for all children.
We propose critical evaluation and discussion of these principles followed by a call to action to shift our conceptualization and enactment of mobility.
This mobility rights perspective challenges current medical systems, industry, and government to collaborate with children with disabilities, their families and communities to support mobility as a source of physical and social interactions that define and develop individuals
(see Supplemental Digital Content 1, the Video Abstract, available at: http://links.lww.com/PPT/A398 ).
Brain activation changes following motor training in children with unilateral cerebral palsy: An fMRI studyRodrigo Araneda, Laurance Dricot, Daniela Ebner-Karestinos, Julie Paradis, Andrew M Gordon, Kathleen M Friel, Yannick Bleyenheuft
Free article
**Abstract
Background:** Intensive motor-learning-based interventions have demonstrated efficacy for improving motor function in children with unilateral spastic cerebral palsy (USCP). Although this improvement has been associated mainly with neuroplastic changes in the primary sensori-motor cortices, this plasticity may also involve a wider fronto-parietal network for motor learning.
Objective: To determine whether hand-arm bimanual intensive therapy including lower extremities (HABIT-ILE) induces brain activation changes in an extensive network for motor skill learning and whether these changes are related to functional changes observed after HABIT-ILE.
Methods: In total, 25 children with USCP were behaviourally assessed in manual dexterity and everyday activities before and after HABIT-ILE. Functional imagery monitored brain activity while participants manipulated objects using their less-affected, more-affected or both hands. Two random-effects-group analyses performed at the whole-brain level assessed the brain activity network before and after therapy. Three other random-effects-group analyses assessed brain activity changes after therapy. Spearman's correlations were used to evaluate the correlation between behavioural and brain activity changes.
Results: The same fronto-parietal network was identified before and after therapy. After the intervention, the more-affected hand manipulation elicited a decrease in activity on the motor cortex of the non-lesional hemisphere and an increase in activity on motor areas of the lesional hemisphere. The less-affected hand manipulation generated a decrease in activity of sensorimotor areas in the non-lesional hemisphere. Both-hands manipulation elicited an increase in activity of both hemispheres. Furthermore, we observed an association between brain activity changes and changes in everyday activity assessments.
Conclusion: Brain activation changes were observed in a fronto-parietal network underlying motor skill learning with HABIT-ILE in children with USCP. Two different patterns were observed, probably related to different phases of motor skill learning, representing an increased practice-dependent brain recruitment or a brain activation refinement by more efficient means. CLINICALTRIALS.GOV: NCT01700777 &NCT02667613.
Keywords: Cerebral palsy; FMRI; HABIT-ILE; Intensive therapy; Neuroplasticity.
It has been an incredible week for the podcast this week. A quick debrief with Ash and Dayna and a look ahead to some exciting new epsiodes!
The NDIS (National Disability Insurance Scheme) and evidence based practice.
A very special ResearchWorks episode as we speak with (Australian) Federal Minister Bill Shorten - the Minister for the National Disability Insurance Scheme (the NDIS).
The NDIS is a very unique Australian treasured, national health care service - there may be no other equivalent of it's kind in the world and though it has had it's share of critics, the NDIS is ever changing and adapting to the needs of Australian families - old and young alike.
The discussion over the NDIS and evidence based practices is at a crossroads and under the stewardship of Minister Bill Shorten, there is a galvanised effort to bring evidence based practices and research to the fore.
The Healthy Strides Foundation was proud to host the Minister as the Foundation is an unequivocal supporter of merging evidence and research into the clinical environment.
We hope you enjoy the mini-episode. It is exciting to note what the future holds for research and evidence fused clinical practices and how the NDIS fits into this model. A very nice blueprint that goes beyond the borders of Australia and is food for thought for every clinician and researcher throughout the developed world.
Persuasion and Communication in Sport, Exercise, and Physical Activity
How can we use persuasion methods to make people more physically active and improve their sport and exercise experiences?
How can instructors, coaches, athletes, and practitioners most effectively communicate their messages to others? Persuasion and Communication in Sport, Exercise, and Physical Activity is the first book to consider the applications of persuasion frameworks within activity-related contexts, whilst also summarising the major developments relating to communication topics in these settings.
It provides a state of the art review of the key developments, challenges, and opportunities within the field. It brings together international experts from the fields of social, health, and sport and exercise psychology, to give theoretical overviews, insights into contemporary research themes and practical implications, as well as agendas for future research.
Covering topics such as changing attitudes towards exercise, social influence, persuasive leadership and communicating with people with physical disabilities, this book provides a contemporary approach to persuasion and communication in a sport, exercise and physical activity setting.
It is an important text for upper-level undergraduate and postgraduate students, as well as academics in the fields of Sport and Exercise Science, Kinesiology, Health and Physical Activity Promotion and related areas of Psychology.
https://www.researchgate.net/publication/316698536_Persuasion_and_Communication_in_Sport_Exercise_and_Physical_Activity
https://www.routledge.com/Persuasion-and-Communication-in-Sport-Exercise-and-Physical-Activity/Jackson-Dimmock-Compton/p/book/9780367407759
Eye movements and stress during eye-tracking gaming performance in children with dyskinetic cerebral palsySaranda Bekteshi, Petra Karlsson, Lieselot De Reyck, Karen Vermeerbergen, Marco Konings, Patrick Hellin, Jean-Marie Aerts, Hans Hallez, Bernard Dan, Elegast Monbaliu
Affiliations expand
- PMID: 35393636
- DOI: 10.1111/dmcn.15237
Abstract
Aim: This study aimed to explore eye movements and stress during eye-tracking gaming performance in children with dyskinetic cerebral palsy (CP) compared with typically developing children, and associations between eye-tracking performance, eye movements, stress, and participants' characteristics.
Method: This cohort study included 12 children with dyskinetic CP aged 5 to 12 years (mean age 8 years 7 months, standard deviation [SD] 2 years 3 months) and 23 typically developing children aged 5 to 13 years (mean age 9 years 0 months, SD 2 years 7 months). Participants played 10 eye-tracking games. Tobii X3-120 and Tobii Pro Lab were used to record and analyse eye movements. Stress was assessed through heart rate variability (HRV), recorded during rest, and eye-tracking performance using the Bittium Faros360° ECG Holter device. Eye-tracking performance was measured using gaming completion time. Fixation and saccade variables were used to quantify eye movements, and time- and frequency-domain variables to quantify HRV. Non-parametric statistics were used.
Results: Gaming completion time was significantly different (p < 0.001) between groups, and it was negatively correlated with experience (rs = -0.63, p = 0.029). No significant differences were found between groups in fixation and saccade variables. HRV significantly changed from rest to eye-tracking performance only in typically developing children and not in children with dyskinetic CP.
Interpretation: Children with dyskinetic CP took longer to perform the 10 games, especially the inexperienced users, indicating the importance of the early provision of eye-tracking training opportunities. It seems that eye-tracking tasks are not a source of increased stress and effort in children with dyskinetic CP.
What this paper adds: Participants with dyskinetic cerebral palsy (CP) took twice as long to perform 10 eye-tracking games than typically developing peers. Participants with dyskinetic CP with previous eye-tracking experience performed the games faster. Fixation and saccade variables were not significantly different between children with and without dyskinetic CP. Heart rate variability showed no differences between rest and performance in participants with dyskinetic CP. Gross Motor Function Classification System, Manual Ability Classification System, and Viking Speech Scale levels were not correlated to the eye movements or stress variables.
Reliability and Validity of the Youth and Young-Adult Participation and Environment Measure (Y-PEM): An Initial EvaluationSaeideh Shahin, Sara Ahmed, Briano DiRezze, Dana Anaby
Abstract
Aim: To examine psychometric properties and aspects of utility of the Youth and young-adult Participation and Environment Measure (Y-PEM).
Methods: Young people with and without physical disabilities (n = 113) aged 12 to 31 (x¯ = 23; SD = 4.3) completed an online survey containing the Y-PEM and QQ-10 questionnaire. To examine construct validity, differences in participation levels and environmental barriers/facilitators were examined between those with (n = 56) and without disabilities (n = 57) via t-test. Internal consistency was computed using Cronbach's alpha. To examine test-retest reliability, a sub-sample of 70 participants completed the Y-PEM a second time, 2-4 weeks apart. The Intraclass correlation coefficient (ICC) was calculated.
Results: Descriptively, participants with disabilities had lower levels of frequency and involvement across all four settings: home, school/educational, community, workplace. Internal consistency were 0.71 and above (up to 0.82) across all scales with the exception of home (0.52) and workplace frequency (0.61). Test-retest reliability were 0.70 and above (up to 0.85) across all settings except for environmental supports at school (0.66) and workplace frequency (0.43). Y-PEM was perceived as a valuable tool with relatively low burden.
Conclusions: Initial psychometric properties are promising. Findings support Y-PEM's use as a feasible self-reported questionnaire for individuals aged 12-30 years old.
Keywords: Assessment; environment; participation measure; transition-aged; workplace participation.
Financial cost and quality of life of patients with spinal muscular atrophy identified by symptoms or newborn screeningTamara Dangouloff, Mickael Hiligsmann, Nicolas Deconinck, Adèle D'Amico, Andreea M Seferian, François Boemer, Laurent Servais
Free article
Abstract
in English and Spanish
Aim: To compare the societal financial costs and quality of life (QoL) of untreated patients with spinal muscular atrophy (SMA) and treated patients identified because they presented symptoms or were identified by early testing (sibling or newborn screening).
Method: Data from two different sources were used: data collected prospectively in untreated patients from 2016 to 2018 and data collected during a prospective follow-up study from 2018 to 2021. Patients or their caregiver completed a questionnaire that included questions on direct medical and non-medical costs, indirect non-medical costs, and health-related QoL.
Results: Data (median; range) were available for 149 patients (93 untreated - 10 years; 2 years-59 years), 42 patients (6 years 3 months; 9 months-58 years) treated after presenting with symptoms, and 14 patients (1 year 7 months; 5 months-2 years) treated after early diagnosis. Total costs were lower in untreated patients due to the high cost of drugs used in treated patients. Costs were lower for treated patients who were identified by early testing than for treated patients identified because they presented with symptoms. In all groups, patients with two SMN2 copies had higher costs than those with more copies.
Interpretation: Early patient identification and treatment offer the opportunity to reduce the total societal costs of SMA where treatments are available for presymptomatic and postsymptomatic patients.
What this paper adds: Untreated patients with spinal muscular atrophy had lower total financial costs than treated patients. Total financial costs were lower for treated patients identified by early screening than for treated patients identified after symptom onset. Direct financial costs excluding treatment were much lower in treated patients identified by early screening. Hospitalization costs were much lower in patients identified by early screening.
Poor comprehenders have difficulty with reading comprehension despite adequate word reading accuracy and fluency.
Weaknesses have been identified with lower-level vocabulary and grammar skills, and higher-level language skills such as inference making. It is important that speech-language pathologists (SLPs) tailor intervention to meet the specific needs of individuals; however, there is a lack of research on intervention for poor comprehenders, who comprise a heterogenous group.
This case study aimed to explore whether a pilot 8-week novel vocabulary intervention was
(a) effective in improving word knowledge, and
(b) if gains generalised to reading comprehension.
Following intervention, significant improvements were found on the semantic subtasks and in word knowledge for treated words on the Word Knowledge Profile measure; improvement was also seen for untreated words at six-month follow-up.
There were also gains on the standardised word and reading comprehension measures, providing promising preliminary evidence for the usefulness of the intervention.
**EACD 2023 Supplemental.
Professor Rocío Palomo-Carrión**University of Castilla-La Mancha
Interview re: Mini-symposium:
Powered mobility: Facilitating participation in children with Spinal Muscular Atrophy (SMA) type I. Ready for the race?
"...The journey of 100 episodes begins with one interview..."
YouTube video link:
https://youtu.be/R0wGTaDI9Yw
A look back at a significant milestone in the life of the Pod.
We are honoured and privileged to be able to bring the podcast to you each and every week. We take great joy in highlighting the work of incredible researchers, clinicians and specialists from around the globe.
Being able to broadcast from the European Academy of Childhood Disability conference (2023) this year was an amazing honour and it was so very wonderful to meet new and old listeners alike and recount the stories of the impact that the podcast is having on professionals and families.
It's all in the name of knowledge translation - we want to ensure that our industry can access high quality information about all the latest in paediatric research and evidence and to make it as accessible as possible to a wider community.
It's been 100 episodes of growth, knowledge, wisdom, understanding, laughs and camaraderie - so join us for a look back at how the Pod came to be, a look at the 3 seasons that have so far made up the Pod and an exciting announcement about the not too distant future!
You'll have to listen to find out! 😉
Dr Dayna PoolCurtin University and the Healthy Strides FoundationThe final words.... Thank you!
Lize Kleeren (PhD Candidate) and Lisa Decraene (PhD Candidate)
KU Leuven
Presentation titles
1: Proximal proprioception in children with and without unilateral cerebral palsy, measured with state-of-the-art robotics.
2: Robotic evaluation of bimanual coordination in children with unilateral cerebral palsy with different manual abilities.
Dr Cristina Simon-Martinez
University of Applied Sciences in Valais (Switzerland)
Poster title: RehaBot: A chatbot between therapists and patients to establish telerehabilitation programs and quantify their outcome.
Anke Arkesteyn, PhD Candidate
KU Leuven
Poster title: Physical activity participation in adolescents with autism spectrum disorder: barriers and facilitations - a qualitative study.
Professor Nora Shields
LaTrobe University, Olga Tennison Autism Research CentrePresentation title: Effect of a community-based intervention (FitSkills) for young people with disability on physical activity participation: a stepped wedge cluster randomised trial
Amy De Roubaix, PhD Candidate
Ghent University
Presentation title: The impact of developmental coordination disorder: preliminary results in Belgium
Assistant Professor Sudarshan Dayanidhi
Shirley Ryan Ability Lab, NorthWestern University
Presentation title: Mitochondrial energetics in impaired muscle growth and across functional levels in children with cerebral palsy
Dr Rachel Toovey
University of Melbourne
Presentation title: Pathways to participation:understanding the experiences of families of children with disability in gymnastics
Álvaro Hidalgo-Robles
Universidad Internacional de La Rioja | UNIR
Topic: Perspectives on EACD2023, early career researchers and an evidence based approach to early intervention,
Aisling Ryan, PhD Candidate
University of Queensland
Presentation title: Expert consensus on optimal child-led goal setting practices for school-aged children with a disability or delay: An International Delphi Study
Sylvain Brochard
(Co-chair of the technological task force for EACD) and BEaCHiLD (Breizh Research and Innovation Centre for Child Development and Rehabilitation) and
Niek De Taeye:Head of family user forum of EACD and parent of daughter with CP.
Presentation title: Building technologies for children with disabilities: how to start from their needs?
Ms Atefeh Taghizadeh, PhD Candidate
LaTrobe University
Presentation title: Development and psychometric properties of the Upper Limb-Motor Learning Strategy Tool (UL-MLST) for children with cerebral palsy
Ahlam Zidan, PhD candidate
McGill University
Presentation: Understanding the effectiveness of transition to adult interventions for adolescents with disabilities it’s a realist informed, mixed method, systematic review.
Associate Professor Leanne Johnston
University of Queensland
Presentation title: Effectiveness of school-based physiotherapy intervention for children: a systematic review
Dr Lisa Mailleux
University of Leuven
Presentation: The assessment of grip strength and stereognosis in preschool aged children with and without unilateral cerebral palsy
Dr Mari Carmen Lillo
Miguel Hernandez University
Presentation title: Early intervention in neurodevelopmental disabilities in Europe: sharing experiences
Professor Roslyn Boyd
Queensland Cerebral Palsy and Rehabilitation Research Centre, University of Queensland
Presentation title: Efficacy of infant friendly Baby-CIMT and Baby-BIM in a randomised trial of home-based parent delivered early intervention for infants at risk of unilateral cerebral palsy
Dr Stacey Cleary
CPAchieve, Murdoch Children’s Research Institute, Honorary University of Melbourne
Presentation title: The experiences and perceptions of participation in daily life of adolescents and young adults with cerebral palsy: a scoping review
Professor Reidun Jahnsen
University of Oslo, Oslo University Hospital
Presentation title: How did youth with cerebral palsy perceive participation in everyday life after participating in a periodical intensive rehabilitation programme based on adapted physical activity? A qualitative interview study
Jorn Ockerman
Ghent University
Presentation title: Current measurement practices and use of technology among Flemish pediatric physiotherapists.
Dr Nathalie De Beukelaer
KU-Leuven, University of Geneva
Presentation title: Morphological muscle growth in infants and toddlers: a longitudinal study
Dr Ruslan Vasyutin
Founder of DCP Help and Master Goal
Presentation title: Challenges of comprehensive rehabilitation for children and families in time of war conflict.
Dr Caroline Alexander
Curtin University, Telethon Kids Institute, Perth Children’s Hospital
Presentation title: Interrater reproducibility of General Movement Assessments and motor optimality scores in large populated based cohort.
Dr Amanda Kwong
University of Melbourne, MCRI
Presentation title: Knowledge translation of early identification of cerebral palsy (KiTE CP) study: engagement in screening implementation among a high-risk prospective cohort of Australian infants.
Associate Professor Helen Bourke Taylor
Monash University
Presentation title: Online Healthy Mothers Healthy Families workshops: positive health and lifestyle impact for mothers of children with disabilities.
Rose Elekanachi
McGill University
Poster title: The development and validation of a cost of care questionnaire for children with arthrogryposis multiplex congenita: a caregiver perspective
How do genetic tests answer questions about neurodevelopmental differences? A sociological take
Daniel Navon
Abstract
When it comes to neurodevelopmental differences, a genetic test result can provide compelling answers. However, it is not always clear what the relevant question is. If we want to understand the impact of a genetic diagnosis such as NGLY1 deficiency or the fragile X, trisomy X, or 22q11.2 deletion syndromes on people with neurodevelopmental differences, we must be mindful about what exactly a genetic test is supposed to tell us, where and for whom it matters, and which avenues for action it opens or forecloses. These are all moving targets.
Specifically, I discuss the shifting ways a genetic test result can answer the following questions.
What is this person's diagnosis?
What symptoms and developmental differences are they likely to experience?
What is the best way to approach their development, treatment, and care?
Will they have a life worth living?
When you unpack the sociological nuances of each question, the history behind them, and the uneven ways they are asked, the meanings of the answers change quite radically. I discuss the implications for social inequalities and urge experts and stakeholders to exercise agency when they interpret a genetic diagnosis.
What this paper adds
- The questions a genetic test can answer depend on a range of social factors.
- Whether and how a genetic test result affects diagnosis, identity, prognosis, and treatment is a moving target.
- Genetics creates questions about a life worth living that it cannot answer alone.
- Stakeholders must choose the questions about neurodevelopmental differences that genetics should answer.
An interview with Connor Johnstone - discussing his personal journey and lived experience, the f-words and what they meant to him and the article: Effects of voluntary exercise on muscle structure and function in cerebral palsy by Noelle G. Moreau and Richard L. Lieber - published in DMCN 2022.
Connor is a personal trainer, support worker and table tennis coach currently studying at Edith Cowan University to become a Clinical Exercise Physiologist. Connor has completed a bachelor's degree in exercise and sport science and a master's degree in strength and conditioning.
Connor was a participation officer at the Healthy Strides Foundation in 2022 and helped create the Participate App. Connor has an athletic background competing in Table Tennis for Australia from 16 until he was 23, and now currently competes in Brazilian Jiu-jitsu.
Connor’s career goal is to help as many people as people with a disability as he can through exercise as a strength and conditioning coach or as a clinical exercise physiologist.
ResearchWorks is going to EACD Slovenia! ✈️🇪🇺We'll be at the conference for EACD - the annual European Academy of Childhood Disability Conference - this year held in Ljubljana Slovenia! 🇸🇮We will have a booth in the main conference hall and hope to see you there! 👋We'll be live recording podcast episodes with many of the conference speakers and bringing you all the latest news from the conference.Stay tuned for the special EACD episodes from May 24 - May 27 and come by the booth and say hello - we'd love to speak with you!www.researchworks.net
Rethinking our physical therapy approach (Redux)This was an inspiring conversation. We covered so much ground and this just reflects the expertise of our guests today.
Diane has been such a driving force for evidence based interventions. Her work has significantly influenced global practices and her passion was so tangible throughout this conversation.
Ginny’s perspective is incredibly refreshing and honest. I love how she seeks out interventions when they look promising but “when it doesn’t pan out”, she has the ability to move on.
There is so much to take away from this episode! The main theme that runs through the conversation is essentially the importance of evidence based practice. It is our professional duty to keep up with the evidence and provide the best level of care. Diane reminds us that there is an urgency in rehab because we have children before us that have developing muscles and brains that need the right input. Science doesn’t compete and this compels us to provide green light interventions because there are so many options now!
The question is - why are non-evidence based interventions still available?
We explored this topic and the persistence of therapists in continuing to provide red light interventions or interventions that use red light intervention principles. For sure, the time, money and personal investment therapists put into their profession are factors that can limit the ability to change their practice.
We are a medical profession and with that, comes a responsibility to follow the science. We are a great source of information for the families that need our services and they would hope that we are up to date with the latest and the best. We have evidence now, and this is different from 50 years ago or even 20 years ago. We can’t simply be doing whatever we want anymore because unlike decades ago when there wasn’t anything guiding us, we now have the evidence. Therefore, we can no longer say there isn’t enough evidence or that we are waiting for more evidence to come. We can start now.
The more I work in this industry and the more I speak with researchers and leading therapists, I too want our profession to grow in effectiveness, influence and impact. The advertising we see online with therapists using moving surfaces and manoeuvres that attempt to integrate reflexes (of which there is no evidence for despite what is said in the advertising) under the banner of manual facilitation techniques, are all part of the red light intervention family. Even when the approach is rebranded from 50 years ago, there is still no grounding or evidence to support its thought processes.
This contrasts so significantly with the green light interventions which are all based on decades of knowledge on motor learning principles. The difference here with the red light interventions is that these principles have been repeatedly proven, time and time again. The science is very clear on this. There is no argument to the contrary so again, why are we still providing red light interventions when we have so many options in the green light family?
I have come to learn that following the science isn’t personal. Saying that an intervention has red light features isn’t personal. Critically evaluating our practices isn’t personal but our professional responsibility. What we provide in our care, as health professionals shouldn’t be personal and based on personal preferences. As a medical profession, if that is what we want it to be, we need a concerted effort by all to ensure that it remains that way.
As Diane said, we’re not done yet and we are continually trying to push the boundaries and find better interventions. To be ready for that though, we need to catch up and not be left in thought processes of 50 years ago. Let’s do this together!
Determinants of gait dystonia severity in cerebral palsyBhooma R Aravamuthan, Toni S Pearson, Keisuke Ueda, Hanyang Miao, Gazelle Zerafati-Jahromi, Laura Gilbert, Cynthia Comella, Joel S Perlmutter
Affiliations expand
- PMID: 36701240
- DOI: 10.1111/dmcn.15524
Abstract
Aim: To determine the movement features governing expert assessment of gait dystonia severity in individuals with cerebral palsy (CP).
Method: In this prospective cohort study, three movement disorder neurologists graded lower extremity dystonia severity in gait videos of individuals with CP using a 10-point Likert-like scale. Using conventional content analysis, we determined the features experts cited when grading dystonia severity. Then, using open-source pose estimation techniques, we determined gait variable analogs of these expert-cited features correlating with their assessments of dystonia severity.
Results: Experts assessed videos from 116 participants (46 with dystonia aged 15 years [SD 3] and 70 without dystonia aged 15 years [SD 2], both groups ranging 10-20 years old and 50% male). Variable limb adduction was most commonly cited by experts when identifying dystonia, comprising 60% of expert statements. Effect on gait (regularity, stability, trajectory, speed) and dystonia amplitude were common features experts used to determine dystonia severity, comprising 19% and 13% of statements respectively. Gait variables assessing adduction variability and amplitude (inter-ankle distance variance and foot adduction amplitude) were significantly correlated with expert assessment of dystonia severity (multiple linear regression, p < 0.001).
Interpretation: Adduction variability and amplitude are quantifiable gait features that correlate with expert-determined gait dystonia severity in individuals with CP. Consideration of these features could help optimize and standardize the clinical assessment of gait dystonia severity in individuals with CP.
Identifying and prioritising strategies to optimise community gym participation for young adults with cerebral palsy: an e-Delphi studyGeorgia McKenzie, Claire Willis, Alexa Yao, Freya Munzel, Rachel Kennedy, Nora Shields
Affiliations expand
- PMID: 37021370
- DOI: 10.1080/09638288.2023.2193431
Abstract
Purpose: Identify and prioritise strategies to optimise physical activity participation in the community gym setting for young adults with cerebral palsy.
Methods: An e-Delphi method was implemented over three rounds with four stakeholder groups (young adults with cerebral palsy, their families, gym staff or exercise professionals, and health professionals). Strategies for change were identified by the stakeholders in round 1. In rounds 2 and 3, strategies for change were rated on the importance for implementation using a 7-point Likert scale (1 being lowest importance, 7 being highest). The consensus was achieved if ≥70% of participants identified a strategy as high importance.
Results: Seventy participants (20 young adults 10 family members, 21 health professionals, and 19 exercise professionals) identified 83 strategies for improving gym participation. Of these, 44 strategies met the consensus criteria. The highest priority strategies related to changing the physical environment, addressing cost barriers, gym staff training, and developing partnerships between sectors.
Conclusions: Addressing physical accessibility, cost of attendance and the skills of gym staff were agreed upon by the stakeholder groups as priority areas for future resource allocation and research translation. Clinicians and community leisure facilities must work with consumers to implement strategies in their local contexts.IMPLICATIONS for rehabilitationThe physical environment, gym staff training, and the cost of attendance are the priority areas for future interventions agreed on by key stakeholder groupsHealth professionals can facilitate community participation by partnering with the recreation and research sectors to create pathways to gym exerciseHealth professionals can play a role in developing the knowledge, skills and confidence of gym staff to support young people with cerebral palsy in the gymWhen implementing 1:1 social support in community gym settings, consider the preferences of young adults and the resources available.
Keywords: Exercise; developmental disabilities; fitness centers; inclusion; leisure activities; ppi (patient and public involvement).
Implementation of an Early Communication Intervention for Young Children with Cerebral Palsy Using Single-Subject Research DesignRoslyn Ward, Elizabeth Barty, Neville Hennessey, Catherine Elliott, Jane Valentine
Affiliations expand
- PMID: 36615031
- PMCID: PMC9821676
- DOI: 10.3390/jcm12010232
Free PMC article
Abstract
The implementation of an intervention protocol aimed at increasing vocal complexity in three pre-linguistic children with cerebral palsy (two males, starting age 15 months, and one female, starting age 16 months) was evaluated utilising a repeated ABA case series design.
The study progressed until the children were 36 months of age. Weekly probes with trained and untrained items were administered across each of three intervention blocks. Successive blocks targeted more advanced protophone production and speech movement patterns, individualised for each participant.
Positive treatment effects were seen for all participants in terms of a greater rate of achievement of target protophone categories and speech movement patterns. Tau coefficients for trained items demonstrated overall moderate to large AB phase contrast effect sizes, with limited evidence of generalisation to untrained items. Control items featuring protophones and speech movements not targeted for intervention showed no change across phases for any participant.
Our data suggest that emerging speech-production skills in prelinguistic infants with CP can be positively influenced through a multimodal intervention focused on capitalising on early periods of plasticity when language learning is most sensitive.
Keywords: cerebral palsy; early intervention; infant vocalisations; infants; single-subject research design.
How much is the right amount of therapy?
Among the most common questions we are asked when it comes to therapy for autistic children is how much therapy should a child be receiving.
This is a really logical question to ask. It reflects the love and concern that parents have for their child, and their strong desire to make decisions that will best support their child now and into the future.
What does the research evidence tell us?
Considerable research over the past three decades have provided good evidence that start to help us understand more about this area. Four clear facts have emerged:
- Early therapies and supports are important.
Early experiences, including therapy early in a child’s life can help shape early brain development, and this early foundation provides a ‘springboard’ for the development of more advanced skills. Early therapy can also provide a way for parents to receive important advice and guidance at a time when this is particularly needed. Importantly, a focus on early therapies doesn’t mean that supports at later ages are not important or effective as well – they are. Both are important.
- There is no ‘standard amount’ of therapy.
There is no set amount of therapy that will lead to better outcomes for all children. Some children will require what we call ‘intensive’ supports, which involves substantial amount of time with a practitioner each week. However, many children do not require such intensive supports, and may benefit best from only a small amount time with a practitioner weekly, fortnightly, monthly or just on occasion as required.
- ‘More’ does not necessarily mean ‘better’.
Research evidence does not indicate that more therapy leads to better outcomes for all children.
- Quality is as important as quantity.
A focus on asking ‘how much’ can sometimes mean that we don’t focus enough on the critical factor of therapy ‘quality’. Having practitioners who are qualified, with current knowledge and skills, and who have access to supervision, are key elements of good practice. The quality of therapy is every bit as important as the amount of therapy a child receives.
What is a better question to ask?
The research evidence tells us that when we ask ‘how much’, we are actually asking the wrong question.
Instead, a better question to ask is: How much is the right amount of therapy for my child and family, right now.
An answer to this question emerges through a partnership between the child, their family and the practitioner. Each person brings unique knowledge and skills to that decision.
How much therapy is needed is determined by the child’s goals, strengths, challenges, and family context. It is only by weighing up all of the information available that a shared decision can be made as to what is the right amount of support now. Ongoing monitoring and review of support gaps or successes, can then decide what, if anything, needs to change to better suit the needs of the child and family.
For those interested in the video-cast, our entire conversation is now available to view on our YouTube page.
https://www.youtube.com/@researchworkspodcast
Global prevalence of cerebral palsy: A systematic analysisSarah McIntyre, Shona Goldsmith, Annabel Webb, Virginie Ehlinger, Sandra Julsen Hollung, Karen McConnell, Catherine Arnaud, Hayley Smithers-Sheedy, Maryam Oskoui, Gulam Khandaker, Kate Himmelmann; Global CP Prevalence Group*
Free PMC article
Abstract
Aim: To determine trends and current estimates in regional and global prevalence of cerebral palsy (CP).
Method: A systematic analysis of data from participating CP registers/surveillance systems and population-based prevalence studies (from birth year 1995) was performed. Quality and risk of bias were assessed for both data sources. Analyses were conducted for pre-/perinatal, postnatal, neonatal, and overall CP. For each region, trends were statistically classified as increasing, decreasing, heterogeneous, or no change, and most recent prevalence estimates with 95% confidence intervals (CI) were calculated. Meta-analyses were conducted to determine current birth prevalence estimates (from birth year 2010).
Results: Forty-one regions from 27 countries across five continents were represented. Pre-/perinatal birth prevalence declined significantly across Europe and Australia (11 out of 14 regions), with no change in postneonatal CP. From the limited but increasing data available from regions in low- and middle-income countries (LMICs), birth prevalence for pre-/perinatal CP was as high as 3.4 per 1000 (95% CI 3.0-3.9) live births. Following meta-analyses, birth prevalence for pre-/perinatal CP in regions from high-income countries (HICs) was 1.5 per 1000 (95% CI 1.4-1.6) live births, and 1.6 per 1000 (95% CI 1.5-1.7) live births when postneonatal CP was included.
Interpretation: The birth prevalence estimate of CP in HICs declined to 1.6 per 1000 live births. Data available from LMICs indicated markedly higher birth prevalence.
What this paper adds:
Birth prevalence of pre-/perinatal cerebral palsy (CP) in high-income countries (HICs) is decreasing.
Current overall CP birth prevalence for HICs is 1.6 per 1000 live births.
Trends in low- and middle-income countries (LMICs) cannot currently be measured.
Current birth prevalence in LMICs is markedly higher than in HICs.
Active surveillance of CP helps to assess the impact of medical advancements and social/economic development.
Population-based data on prevalence and trends of CP are critical to inform policy.
Parenting a Child with a Neurodevelopmental DisorderPeter L Rosenbaum, Monika Novak-Pavlic
Watch the video-cast at the ResearchWorks Podcast YouTube Channel!
https://youtu.be/MUfMh5lYk_I
Free PMC article
Abstract
Purpose of review: Traditional thinking and focus in 'childhood disability' have been on the child with the impairment - with the imperative to make the right diagnosis and find the right treatments. The implicit if not direct expectation was that interventions should aim to 'fix' the problems. Professionals have led the processes of investigation and management planning, with parents expected to 'comply' with professionals' recommendations. Much less attention has been paid to parents' perspectives or their wellbeing.
Recent findings: In the past two decades, we have seen a sea change in our conceptualizations of childhood disability. The WHO's framework for health (the International Classification of Functioning, Disability and Health (aka ICF)) and CanChild's 'F-words for Child Development' inform modern thinking and action. We now recognize the family as the unit of interest, with parents' voices an essential element of all aspects of management. The goals of intervention are built around the F-words ideas of function, family, fun, friendships, fitness and future.
Summary: There has been world-wide uptake of the F-words concepts, with increasing evidence of the impact of these ideas on parents and professionals alike. There are important implications of these developments on the structure, processes and content of services for children with neurodevelopmental disorders, their families and the services designed to support them.
Keywords: Child and family development; Childhood disability; F-words in child development; Family wellbeing; ICF.
© The Author(s), under exclusive licence to Springer Nature Switzerland AG 2021.
Conflict of interest statement
Conflict of InterestIn this article, Peter Rosenbaum and Monika Novak-Pavlic present and discuss CanChild’s F-words for Child Development and describe the CIHR-funded ENVISAGE study. Dr. Rosenbaum is the lead author of the original F-words paper that reported these concepts.
All the F-words materials discussed in this paper are available for free on the authors’ website: www.canchild.ca/f-words.
ENVISAGE is a research study underway as this paper was being written, and there are no financial implications of this work.
Peter Rosenbaum and Monika Novak-Pavlic declare no conflicts of interest relevant to this manuscript.
Evidence-Based Clinical Practice Guideline For Attention Deficit Hyperactivity Disorder (ADHD) .
This clinical practice guideline is for the identification, diagnosis, and treatment of people with ADHD.
It outlines a roadmap for ADHD clinical practice, research and policy, now and in the future, with a focus on everyday functioning and quality of life for people who are living with ADHD and those who support them.
The Guideline includes eight chapters covering the identification, diagnosis, and treatment of people with ADHD, as well as considerations for subgroups, service & policy and further research.
- Identification
- Diagnosis
- Treatment & Support
- Non-Pharmacological Interventions
- Pharmacological Interventions
- Considerations – Subgroups
- Considerations – Service & Policy
- Considerations – Research
Approvals
This guideline has been approved by the NHMRC and endorsed by APS, RACP, RACGP, Speech Pathology Australia, Occupational Therapy Australia, ACPA, AAPI, ADHD WA, ADHD Foundation, RANZCP, ADHD Australia and the World Federation of ADHD.
The guidelines can be downloaded at the link below:
https://aadpa.com.au/guideline/
The ResearchWorks Team is back for Season 3 with an all-star lineup of brilliant researchers - starting with Professor Mark Bellgrove, Professor Peter Rosenbaum, Professor Andrew Whitehouse and Dr Sarah McIntyre!
The episodes will release from March 5, 2023.
For more information on the pod, or to catch up on previous seasons and episodes - visit our website:
www.researchworks.net
LIVED EXPERIENCE - AN INSIGHT ON THERAPY, THE F-WORDS, RESEARCH AND EVIDENCE BASED PRACTICES AND WHAT KIND OF IMPACT IT CAN HAVE.Today’s episode is one of our wrap up episodes where we bring together all the topics of conversation from the past season.
We will be referring to the work of Christine Imms and the Family of Participation Related Constructs, Physical Activity through sport and the work of Georgina Clutterbuck, Hércules Ribeiro Leite.
Moving through different life stages and the reasons for doing what we do - highlighting the work of Mark Peterson and of course the overarching framework that is the CanChild F-words.
Welcome to Season 2's end of year wrap up episode!
We have had so very many excellent guests on the pod - both in person and online and covered a plethora of topics over that time. For episodes up to 56 , you'll find our mid-season wrap up in episode 57.
This weeks episode covers our conversations with:
Dr Catherine Morgan
Professor Hércules Ribeiro Leite
Associate Professor Helen Leonard
Associate Professor Suze Leitão
Dr Elizabeth Hill & Dr Samuel Calder
Ginny Paleg & Clinical Associate Professor Roslyn Livingstone
Dr Lisa Mailleux and Lize Kleeren
Dr Emily Jackson
Professor Christine Imms
Professor Veronique Bach and Dr Sue McCabe
Dr Kyla Smith
We still have one more extra special episode coming this year - so stay tuned for that one but the team will then be on their Summer Break until early February 2023. With a number of exciting announcements to come about the pod and the future!
www.researchworks.net
AN EVIDENCE BASED APPROACH TO HEALTHY EATING
Dr Kyla Smith is a paediatric dietician with a passion for helping families to feed their children well without the overwhelm. Dr Smith has a PhD in childhood weight management and 15 years experience working with restrictive eaters both in her clinic and online programs. Dr Smith has developed a suite of online programs and resources to help families feed their children with confidence.
As the first paediatric dietician on our show, I must say, what a way to start! This episode sets the foundation for a lot of future conversations and I would encourage you to share this episode with your friends and family!
The concept of the “division of responsibility” is one of great importance and significance in our current context. “You provide and they decide” is so valuable in every household and extends to children with neurodisabilities. We know that some children with neurodisabilities have sensory preferences associated with past experiences. In these instances, forcing the issue of feeding a variety of food can be frustrating for all involved.
Providing choice and autonomy remains relevant. However, it is also vital that if there are concerns with intake and growth that help is sought from a health professional. For some children this may mean dietary supplements that are provided by a clinical expert following clinical guidelines. Dr Smith’s advice to “stay in our lane” as health professionals or well-meaning people in our community becomes very relevant here. Just because we all eat, doesn’t mean we are an expert in providing nutritional advice if children are not eating well to support their growth! It is so important to recognise the biases that we may bring from our own upbringing and experiences and distinguish this from actual evidence based information.
The overwhelm of information from uncurated sources continues to ring true in this area. To distinguish between evidence based advice and personal testimonial advice is a difficult task. Therefore, seeking expert advice if there are concerns about nutritional intake cannot be overstated.
On a more general note that is relevant to all of us, whether we have children or not is that there is so much power in our language. To learn that a third of adolescents have some kind of disordered eating behaviour was alarming. The commentary from so many sources today about diet culture surrounds us and we need to be more conscious than ever about our language and how we talk about food with each other and our young people.
For more information on Dr Smith - visit her website
https://mealtimes.com.au/
Thermoregulation in wakefulness and sleep in humans
Veronique Bach, Frederic Telliez, Karen Chardon, Pierre Tourneux, Virginie Cardot, Jean-Pierre Libert
In this episode, we talk more broadly about thermoregulation in wakefulness and sleep in humans - a bit of a deep dive into human physiology. We increasingly understand that there is a relationship between sleep, body temperature regulation and patterns of skin temperature.
The functional consequences of this relationship is that sleep disturbances can be observed with thermoregulatory changes. Knowing that there is this relationship, there are a number of clinical implications that can be influenced by therapists and the environment.
Some considerations include
(1) how thermoregulatory responses can be modified by sleep stages;
(2) how skin and internal body temperatures vary according to the sleep-wake cycle;
(3) how manipulating thermal parameters can influence sleep quantity and structure.
Participation, both a means and an end: a conceptual analysis of processes and outcomes in childhood disabilityChristine Imms, Mats Granlund, Peter H Wilson, Bert Steenbergen, Peter L Rosenbaum, Andrew M Gordon
- PMID: 27640996
- DOI: 10.1111/dmcn.13237
Free article
AbstractThis review outlines a conceptual approach to inform research and practice aimed at supporting children whose lives are complicated by impairment and/or chronic medical conditions, and their families.
'Participation' in meaningful life activities should be an essential intervention goal, to meet the challenges of healthy growth and development, and to provide opportunities to help ensure that young people with impairments reach their full potential across their lifespan.
Intervention activities and research can focus on participation as either an independent or dependent variable. The proposed framework and associated hypotheses are applicable to children and young people with a wide variety of conditions, and to their families.
In taking a fresh 'non-categorical' perspective to health for children and young people, asking new questions, and exploring issues in innovative ways, we expect to learn lessons and to develop creative solutions that will ultimately benefit children with a wide variety of impairments and challenges, and their families, everywhere.
Word learning and verbal working memory in children with developmental language disorderEmily Jackson, Suze Leitão, Mary Claessen and Mark Boyes.
https://doi.org/10.1177/23969415211004109
https://orcid.org/0000-0002-2537-7387
Abstract
Background and aims
Previous research into word learning in children with developmental language disorder (DLD) indicates that the learning of word forms and meanings, rather than form-referent links, is problematic. This difficulty appears to arise with impaired encoding, while retention of word knowledge remains intact. Evidence also suggests that word learning skills may be related to verbal working memory. We aimed to substantiate these findings in the current study by exploring word learning over a series of days.
Methods
Fifty children with DLD (mean age 6; 11, 72% male) and 54 age-matched typically developing (TD) children (mean age 6; 10, 56% male) were taught eight novel words across a four-day word learning protocol. Day 1 measured encoding, Days 2 and 3 measured re-encoding, and Day 4 assessed retention. At each day, word learning success was evaluated using Naming, Recognition, Description, and Identification tasks.
Results
Children with DLD showed comparable performance to the TD group on the Identification task, indicating an intact ability to learn the form-referent links. In contrast, children with DLD performed significantly worse for Naming and Recognition (signifying an impaired ability to learn novel word forms), and for Description, indicating problems establishing new word meanings. These deficits for the DLD group were apparent at Days 1, 2, and 3 of testing, indicating impairments with initial encoding and re-encoding; however, the DLD and TD groups demonstrated a similar rate of learning. All children found the retention assessments at Day 4 difficult, and there were no significant group differences. Finally, verbal working memory emerged as a significant moderator of performance on the Naming and Recognition tasks, such that children with DLD and poor verbal working memory had the lowest levels of accuracy.
Conclusions
This study demonstrates that children with DLD struggle with learning novel word forms and meanings, but are unimpaired in their ability to establish new form-referent links. The findings suggest that the word learning deficit may be attributed to problems with encoding, rather than with retention, of new word knowledge; however, further exploration is required given the poor performance of both groups for retention testing. Furthermore, we found evidence that an impaired ability to learn word forms may only be apparent in children who have DLD and low levels of verbal working memory.
Implications
When working with children with DLD, speech-language pathologists should assess word learning using tasks that evaluate the ability to learn word forms, meanings, and form-referent links to develop a profile of individual word learning strengths and weaknesses. Clinicians should also assess verbal working memory to identify children at particular risk of word learning deficits. Future research should explore the notion of optimal intervention intensity for facilitating word learning in children with poor language and verbal working memory.
Somatosensation and bringing together current science and anatomical knowledge combined with some practical strategies that can support children with unilateral cerebral palsy.The pediatric rehabilitation research unit at KU Leuven, under supervision of professor Hilde Feys, is dedicated to the evaluation and rehabilitation in children with neurological disorders, and more specifically in children with cerebral palsy.
The main focus of current research is on upper limb function in children with unilateral cerebral palsy. The team studies upper limb function from a clinical, biomechanical and neurological approach. Research methodologies have been developed, including a clinical evaluation protocol, 3D movement analysis and instrumented assessment of mirror movements.
These methods were also supplemented with brain imaging (structural & diffusion) and non-invasive stimulation to map the neural correlates of behavioral dysfunction and predict rehabilitation outcomes.
Their current work focuses on the assessment of bimanual motor control, using robotics and instrumented outcome measures. Currently, three PhD-students are working on this large project, of whom Lize Kleeren will specifically focus on bimanual motor control and its relation with the somatosensory system, both from a behavioral and neurological approach.
This is such a great episode that brings together current science and anatomical knowledge combined with some practical strategies that can support children with unilateral cerebral palsy.
This episode emphasizes the importance of assessment. Somatosensation is a strong predictor for motor outcomes. With this in mind, we need to know the extent of its influence so that we can put together a targeted and adequately dosed intervention plan.
Evidence-informed clinical perspectives on postural management for hip health in children and adults with non-ambulant cerebral palsyGinny Paleg, Roslyn Livingstone
Affiliations expand
- PMID: 35275575
- DOI: 10.3233/PRM-220002
Abstract
Postural management is a multi-disciplinary approach incorporating a comprehensive schedule of daily and night-time positions, equipment and physical activity to help maintain or improve body structures and function and increase activity and participation.
Postural management may play a role in preventing contracture, deformity, pain, and asymmetry. This article provides an overview of the evidence supporting use of postural management to positively influence hip health in individuals with cerebral palsy, functioning as Gross Motor Classification System (GMFCS) levels IV or V.
Sitting or lying without changing position for more than 8 hours, unsupported supine lying and asymmetrical or windswept postures are associated with pain and hip subluxation/dislocation. Although high-quality experimental research is still limited by many factors, there is limited evidence of harm, and most individuals at GMFCS IV or V require positioning supports to enable participation and function and ease caregiving.
Clinical recommendations combining research and clinical opinion support the early use of comfortable positioning routines and/or equipment to reduce time spent in sustained asymmetrical or potentially harmful sitting and lying positions. Supported standing, active weight bearing and stepping are recommended to promote active movement and position change when possible, depending on individual, family and caregiver routines and preferences.
The prevalence of and potential risk factors for Developmental Language Disorder at 10 years in the Raine StudySamuel D Calder, Christopher G Brennan-Jones, Monique Robinson, Andrew Whitehouse, Elizabeth Hill
- PMID: 35922883
- DOI: 10.1111/jpc.16149
Abstract
Aim: This study sought to determine the prevalence of Developmental Language Disorder (DLD) in Australian school-aged children and associated potential risk factors for DLD at 10 years.
Methods: This study used a cross-sectional design to estimate the prevalence of DLD in Generation 2 of the prospective Raine Study. Participants included 1626 children aged 10 years with available language data. Primary outcomes included variables matching diagnostic criteria for DLD. Associations of other potential prenatal and environmental variables were analysed as secondary outcomes.
Results: The prevalence of DLD in this sample was 6.4% (n = 104) at 10 years. This sub-cohort comprised 33.7% (n = 35) with expressive language deficits, 20.2% (n = 21) with receptive language deficits, and 46.2% (n = 48) with receptive-expressive deficits. No significant difference in sex distribution was observed (52.9% male, p = 0.799). Children who were exposed to smoke in utero at 18 weeks gestation were at increased risk of DLD at 10 years (OR = 2.56, CI = 1.23-5.35, p = 0.012).
Conclusions: DLD is a relatively prevalent condition in Australian children, even when assessed in middle childhood years. These findings can inform future research priorities, and public health and educational policy which account for the associations with potential risk factors.
Language and Literacy in Young People
Associate Professor Suze Leitão
This week, we set the scene for many upcoming conversations from researchers in the area of language and literacy.
We took a broad view of what Language and Literacy in Young People is, what research is currently being conducted and where we can look to for the most up to date research in the area.
There are several strands of research that we discussed which include intervention, theory and assessment, justice and mental health. All of this research along with resources from the team are freely available at https://www.languageandliteracyinyoungpeople.com/
A common question I often get from friends and colleagues is in the absence of any formal diagnosis, when should a child be referred to a speech pathologist?
I learnt that a key concept is that if a parent or significant person in a child’s life has concerns, then it is wise to seek an assessment. Far too often, parents are told ‘they will grow out of it.’ We discussed some of the work by this research team is access to and maintenance of access to services.
One of their projects is called “Finding the way to services: families' use of advice and publicly available information in navigating access to early intervention services." With more than one in five children in Western Australia (WA) considered developmentally vulnerable at school-entry, it is well-established that intervening early is essential to supporting lifelong developmental trajectories.
However, research globally has identified significant delays across the stages of noticing, sharing concerns, and accessing services for children with developmental delays. As we discussed in the podcast, you can be part of this study through the following links:
https://curtin.au1.qualtrics.com/jfe/form/SV_1IcFxhLPPfU8up0 and through Facebook: https://www.facebook.com/people/Finding-the-Way-to-Services/100082601830008/
Another resource Suze discussed was the website for families who are waiting for speech pathology: https://wnswlhd.health.nsw.gov.au/our-services/speech-pathology/
Finally, another resource Suze discussed was the book for parents and professionals to help them sort out snake oil from evidence based practice. This book is called Making Sense of Interventions for Children with Developmental Disorders: A guide for parents and professionals, by Caroline Bowen and Pamela Snow Croydon: J&R Press, 2017, 406pp., ISBN: 978-1-907826-32-0
https://www.jr-press.co.uk/making-sense-of-interventions-for-childrens-developmental-disorders.html
Stay tuned for a deeper dive into some of the areas we discussed in this podcast with Suze.
CDKL5 deficiency disorder: clinical features, diagnosis, and managementHelen Leonard, Jenny Downs, Tim A Benke, Lindsay Swanson, Heather Olson, Scott Demarest
Abstract
CDKL5 deficiency disorder (CDD) was first identified as a cause of human disease in 2004. Although initially considered a variant of Rett syndrome, CDD is now recognised as an independent disorder and classified as a developmental epileptic encephalopathy. It is characterised by early-onset (generally within the first 2 months of life) seizures that are usually refractory to polypharmacy.
Development is severely impaired in patients with CDD, with only a quarter of girls and a smaller proportion of boys achieving independent walking; however, there is clinical variability, which is probably genetically determined. Gastrointestinal, sleep, and musculoskeletal problems are common in CDD, as in other developmental epileptic encephalopathies, but the prevalence of cerebral visual impairment appears higher in CDD.
Clinicians diagnosing infants with CDD need to be familiar with the complexities of this disorder to provide appropriate counselling to the patients' families.
Despite some benefit from ketogenic diets and vagal nerve stimulation, there has been little evidence that conventional antiseizure medications or their combinations are helpful in CDD, but further treatment trials are finally underway.
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 palsyRicardo Rodrigues de Sousa Junior, Deisiane Oliveira Souto, Ana Cristina Resende Camargos, Georgina L Clutterbuck, Hércules Ribeiro Leite
Abstract
Purpose: To analyze the effectiveness of sports-focused interventions on the participation of children and adolescents with cerebral palsy (CP).
Methods: Study searches were conducted on EMBASE, PubMed, Scielo, PEDro, CINAHL, SPORTDiscuss in June 2022. We included randomized controlled trials that investigated the effectiveness of sports-focused interventions in children and adolescents with CP in comparison with control. Risk of bias was assessed with PEDro scale and evidence certainty with GRADE approach. Data were pooled in random-effects meta-analyses and results were presented as standardized mean differences.
Results: Ten RCTs were selected with different modalities, mostly for ambulant children and adolescents. Significant pooled effects on participation in leisure-time physical activity were seen only in group interventions (modified sports, gross motor training, and fitness training), in comparison with control [SMD(95% CI) = 0.32(0.01-0.73) p = 0.04]. No pooled effects were seen in participation in other life areas in comparison with control (p > 0.05). Current certainty of evidence of all sports-focused interventions included was moderate due to imprecision.
Conclusion: Positive results on leisure-time participation were seen at short-term follow-up for group interventions. Sports-focused interventions did not improve participation in other life areas, reinforcing the importance of specificity when conducting participation interventions. Studies investigating sports-focused interventions including non-ambulatory individuals are still necessary. IMPLICATIONS FOR REHABILITATIONSports-focused interventions target leisure-time physical activity participation. They present moderate evidence of their effectiveness to improve physical activity participation in individuals with cerebral palsy. Group interventions are effective in improving leisure-time physical activity participation.Sports-focused interventions did not improve participation in other life areas.
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
Catherine Morgan, Linda Fetters, Lars Adde, Nadia Badawi, Ada Bancale, Roslyn N Boyd, Olena Chorna, Giovanni Cioni, Diane L Damiano, Johanna Darrah, Linda S de Vries, Stacey Dusing, Christa Einspieler, Ann-Christin Eliasson, Donna Ferriero, Darcy Fehlings, Hans Forssberg, Andrew M Gordon, Susan Greaves, Andrea Guzzetta, Mijna Hadders-Algra, Regina Harbourne, Petra Karlsson, Lena Krumlinde-Sundholm, Beatrice Latal, Alison Loughran-Fowlds, Catherine Mak, Nathalie Maitre, Sarah McIntyre, Cristina Mei, Angela Morgan, Angelina Kakooza-Mwesige, Domenico M Romeo, Katherine Sanchez, Alicia Spittle, Roberta Shepherd, Marelle Thornton, Jane Valentine, Roslyn Ward, Koa Whittingham, Alieh Zamany, Iona Novak.
Free article
Abstract
Importance: Cerebral palsy (CP) is the most common childhood physical disability. Early intervention for children younger than 2 years with or at risk of CP is critical. Now that an evidence-based guideline for early accurate diagnosis of CP exists, there is a need to summarize effective, CP-specific early intervention and conduct new trials that harness plasticity to improve function and increase participation. Our recommendations apply primarily to children at high risk of CP or with a diagnosis of CP, aged 0 to 2 years.
Objective: To systematically review the best available evidence about CP-specific early interventions across 9 domains promoting motor function, cognitive skills, communication, eating and drinking, vision, sleep, managing muscle tone, musculoskeletal health, and parental support.
Evidence review: The literature was systematically searched for the best available evidence for intervention for children aged 0 to 2 years at high risk of or with CP. Databases included CINAHL, Cochrane, Embase, MEDLINE, PsycInfo, and Scopus. Systematic reviews and randomized clinical trials (RCTs) were appraised by A Measurement Tool to Assess Systematic Reviews (AMSTAR) or Cochrane Risk of Bias tools. Recommendations were formed using the Grading of Recommendations Assessment, Development, and Evaluation (GRADE) framework and reported according to the Appraisal of Guidelines, Research, and Evaluation (AGREE) II instrument.
Findings: Sixteen systematic reviews and 27 RCTs met inclusion criteria. Quality varied. Three best-practice principles were supported for the 9 domains: (1) immediate referral for intervention after a diagnosis of high risk of CP, (2) building parental capacity for attachment, and (3) parental goal-setting at the commencement of intervention. Twenty-eight recommendations (24 for and 4 against) specific to the 9 domains are supported with key evidence: motor function (4 recommendations), cognitive skills (2), communication (7), eating and drinking (2), vision (4), sleep (7), tone (1), musculoskeletal health (2), and parent support (5).
Conclusions and relevance: When a child meets the criteria of high risk of CP, intervention should start as soon as possible. Parents want an early diagnosis and treatment and support implementation as soon as possible. Early intervention builds on a critical developmental time for plasticity of developing systems. Referrals for intervention across the 9 domains should be specific as per recommendations in this guideline.
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!
2. The importance of measurement, and understanding WHAT you’re measuring and WHY
3. We were constantly reminded of best practice principles to improve function in cerebral palsy.
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!
The 2nd part of a 2 part series of interviews with Dr Leanne Sakzewski and Dr Sarah Reedman.
As part of the training for NHMRC research project Active Strides-CP, Dr Sakzewski and Dr Reedman were visiting the Healthy Strides Foundation for training on the STRIDE component of the study.
It was a rare opportunity to interview 2 of Australia's finest about all things research - the NHMRC, the HABIT-ILE study, Active Strides-CP, RCTs (randomized controlled trials) what makes up evidence based practice, the truth behind neuroplasticity and so much more!
A 2 part series of interviews with Dr Leanne Sakzewski and Dr Sarah Reedman.
As part of the training for NHMRC research project Active Strides-CP, Dr Sakzewski and Dr Reedman were visiting the Healthy Strides Foundation for training on the STRIDE component of the study.
It was a rare opportunity to interview 2 of Australia's finest about all things research - the NHMRC, the HABIT-ILE study, Active Strides-CP, RCTs (randomized controlled trials) what makes up evidence based practice, the truth behind neuroplasticity and so much more!
Neuroimaging findings in children with cerebral palsy with autism and/or attention-deficit/hyperactivity disorder: a population-based study
Magnus Påhlman, Christopher Gillberg, Kate Himmelmann
Abstract
Aim
To compare neuroimaging patterns according to the Magnetic Resonance Imaging Classification System (MRICS) in children with cerebral palsy (CP) with and without autism and/or attention-deficit/hyperactivity disorder (ADHD).
Method
This population-based study assessed 184 children (97 males, 87 females) with CP born from 1999 to 2006 from the CP register of western Sweden, who had completed comprehensive screening and clinical assessment for neuropsychiatric disorders and undergone neuroimaging.
Results
Autism (total prevalence 30%) and ADHD (31%) were common in all neuroimaging patterns, including normal. Autism and ADHD were not more prevalent in children with bilateral than unilateral lesions, contrary to other associated impairments. Children with predominant white matter injury, related to insults in the late second or early third trimester, had the highest prevalence of autism (40%). Children who had sustained a middle cerebral artery infarction had the highest prevalence of ADHD (62%).
Interpretation
Although autism and ADHD are common regardless of neuroimaging patterns, timing and localization of insult appear to be of importance for the occurrence of autism and ADHD in children with CP. Neuroimaging may be of prognostic value for these associated impairments. Further in-depth neuroimaging studies may lead to a better understanding of the association between CP and neuropsychiatric disorders.
Abstract
podcast : (https://youtu.be/_JXBo055-is)
This original article is commented by Kraegeloh-Mann on page 10 of this issue.
Abbreviation
MRICS
Magnetic Resonance Imaging Classification System
What this paper adds
- Autism and/or attention-deficit/hyperactivity disorder (ADHD) were common in children with cerebral palsy regardless of neuroimaging findings.
- Prevalence of autism and ADHD did not differ between unilateral and bilateral lesions.
- Autism was more often associated with white matter injury and ADHD with middle cerebral artery infarction.
A qualitative analysis of the experiences of children with cerebral palsy and their caregivers in a goal-directed cycling programmeEllen L Armstrong, Roslyn N Boyd, Christopher P Carty, Megan J Kentish, Benjamin I Goodlich, Sean A Horan
Abstract
Purpose: This qualitative thematic analysis aimed to capture the experiences of children with cerebral palsy (CP) and caregivers who completed an 8-week goal-directed cycling programme, to provide insights on engagement and programme feasibility.
Methods: Children with CP (6-18 years, Gross Motor Function Classification Scale (GMFCS) levels II-IV) and caregivers completed semi-structured interviews at the end of the training programme. Interview transcripts were coded by two investigators and systematically organised into themes. A third investigator reviewed the final thematic map.
Results: 17 interviews were conducted with 29 participants (11 children: 7-14 years). Four themes emerged: facilitators and challenges to programme engagement; perceived outcomes; the functional-electrical stimulation (FES) cycling experience; and previous cycling participation. Engagement was facilitated by the "therapist's connection," "cycling is fun" and "participant driven goal setting," while "getting there" and "time off school" were identified as challenges. Participants positively linked improved physical function to greater independence. The FES-experience was "fun and challenging," and participants had mixed feelings about electrode "stickiness." Previous cycling participation was limited by access to adapted bikes.
Conclusions: Children with CP enjoy riding bikes. Facilitators and challenges to engagement were identified that hold practical relevance for clinicians. Environmental and personal factors should be carefully considered when developing future programs, to maximise opportunities for success.
Keywords: Adapted bikes; adapted cycling; cerebral palsy; functional electrical stimulation; goal-directed training; paediatrics.
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 assessmentsNadine Smith, Simon Garbellini, Natasha Bear, Ashleigh Thornton, Peta Watts, Noula Gibson
Abstract
Purpose: To determine the feasibility of using parent-reported outcome measures of the Paediatric Pain Profile (PPP), Sleep Disturbance Scale for Children (SDSC) and Care and Comfort Hypertonicity Questionnaire (CCHQ) as repeated outcome measures of change at weekly intervals for children with dyskinetic cerebral palsy (CP). The secondary aim was to explore the efficacy of individualised movement intervention.
Material and methods: In this pilot feasibility study a single subject research design was utilised. Three children with dyskinetic CP, completed 5 weeks of parent-reported baseline assessments, 8 weekly sessions of intervention and 5 weeks of follow up.
Results: All children completed 18 weeks of the study, with no missing data. There was evidence of parent-reported improvements in their child's pain and care and comfort between the baseline and intervention phases.
Conclusions: The PPP, SDSC and CCHQ were feasible to assess pain, sleep and comfort before and after an intervention in children with dyskinetic CP. There is preliminary evidence that individualised movement intervention as little as once a week may help improve pain, sleep and improve ease of care and comfort. IMPLICATIONS FOR REHABILITATIONThe Paediatric Pain Profile is feasible to identify and monitor pain, as frequently as weekly, in children with dyskinetic cerebral palsy (CP).There is preliminary evidence that movement can decrease pain in children with dyskinetic CP.Assessments and treatment in this group may be interrupted due to their complex health issues which may be a limitation when collecting repeated measures.
Neurodevelopmental Therapy for Cerebral Palsy: A Meta-analysisAnna Te Velde, Catherine Morgan, Megan Finch-Edmondson, Lynda McNamara, Maria McNamara, Madison Claire Badawy Paton, Emma Stanton, Annabel Webb, Nadia Badawi, Iona Novak
Abstract
Background and objective: Bobath therapy, or neurodevelopmental therapy (NDT) is widely practiced despite evidence other interventions are more effective in cerebral palsy (CP). The objective is to determine the efficacy of NDT in children and infants with CP or high risk of CP.
Methods: Cumulative Index to Nursing and Allied Health Literature, Cochrane Library, Embase, and Medline were searched through March 2021. Randomized controlled trials comparing NDT with any or no intervention were included. Meta-analysis was conducted with standardized mean differences calculated. Quality was assessed by using Cochrane Risk of Bias tool-2 and certainty by using Grading of Recommendations Assessment, Development, and Evaluation.
Results: Of 667 records screened, 34 studies (in 35 publications, 1332 participants) met inclusion. Four meta-analyses were conducted assessing motor function. We found no effect between NDT and control (pooled effect size 0.13 [-0.20 to 0.46]), a moderate effect favoring activity-based approaches (0.76 [0.12 to 1.40]) and body function and structures (0.77 [0.19 to 1.35]) over NDT and no effect between higher- and lower-dose NDT (0.32 [-0.11 to 0.75]). A strong recommendation against the use of NDT at any dose was made. Studies were not all Consolidated Standards of Reporting Trials-compliant. NDT versus activity-based comparator had considerable heterogeneity (I2 = 80%) reflecting varied measures.
Conclusions: We found that activity-based and body structure and function interventions are more effective than NDT for improving motor function, NDT is no more effective than control, and higher-dose NDT is not more effective than lower-dose. Deimplementation of NDT in CP is required.
Development of the Gross Motor Function Family Report (GMF-FR) for Children with Cerebral PalsyPaula S. C. Chagas, Peter Rosenbaum, F. Virginia Wright, Lesley Pritchard, Marilyn Wright, Aline Martins Toledo, Ana Cristina R Camargos, Egmar Longo, Hercules R. Leite.Purpose: To describe the initial steps in the development of a family-completed, modified version of the Gross Motor Function Measure (GMFM-88) to report gross motor function of young people with cerebral palsy in their natural environments.
Methods: Development of the Gross Motor Function – Family Report (GMF-FR) was based on expert opinion involving 13 experienced clinicians and researchers, in four steps: (1) item identification to target items that reflect functional gross motor performance; (2) item selection; (3) critical analysis of the items; and (4) item and scoring modification.
Results: Several modifications to existing items and scoring were made, including wording changes to optimize ease of families’ understanding, the addition of photographs to illustrate all items, changes to the items to enable use of furniture instead of specialized equipment, and modifications to scoring criteria to ensure a focus on functional motor skills. Ultimately, 30 items were selected, and specific testing/scoring instructions were created for each item.
Conclusions: GMF-FR is a new family-report tool, based on the GMFM-88. When validated, it can be used as a telehealth outcome measure to capture family-reported functional motor skill performance in home and community environments.
Psychological morbidity among adults with cerebral palsy and spina bifidaMark D Peterson, Paul Lin, Neil Kamdar, Elham Mahmoudi, Christina N Marsack-Topolewski, Heidi Haapala, Karin Muraszko, Edward A Hurvitz
- PMID: 32713401
- DOI: 10.1017/S0033291720001981
Abstract
Background: Very little is known about the risk of developing psychological morbidities among adults living with cerebral palsy (CP) or spina bifida (SB). The objective of this study was to compare the incidence of and adjusted hazards for psychological morbidities among adults with and without CP or SB.
Methods: Privately insured beneficiaries were included if they had an International Classification of Diseases, Ninth revision, Clinical Modification diagnostic code for CP or SB (n = 15 302). Adults without CP or SB were also included (n = 1 935 480). Incidence estimates of common psychological morbidities were compared at 4-years of enrollment. Survival models were used to quantify unadjusted and adjusted hazard ratios for incident psychological morbidities.
Results: Adults living with CP or SB had a higher 4-year incidence of any psychological morbidity (38.8% v. 24.2%) as compared to adults without CP or SB, and differences were to a clinically meaningful extent. Fully adjusted survival models demonstrated that adults with CP or SB had a greater hazard for any psychological morbidity [hazard ratio (HR): 1.60; 95% CI 1.55-1.65], and all but one psychological disorder (alcohol-related disorders), and ranged from HR: 1.32 (1.23, 1.42) for substance disorders, to HR: 4.12 (3.24, 5.25) for impulse control disorders.
Conclusions: Adults with CP or SB have a significantly higher incidence of and risk for common psychological morbidities, as compared to adults without CP or SB. Efforts are needed to facilitate the development of improved clinical screening algorithms and early interventions to reduce the risk of disease onset/progression in these higher-risk populations.
Measurement of Upper Limb Range of Motion Using Wearable Sensors: A Systematic ReviewCorrin P Walmsley, Sîan A Williams, Tiffany Grisbrook, Catherine Elliott, Christine Imms, Amity Campbell
Affiliations expand
- PMID: 30499058
- PMCID: PMC6265374
- DOI: 10.1186/s40798-018-0167-7
Free PMC article
Abstract
Background: Wearable sensors are portable measurement tools that are becoming increasingly popular for the measurement of joint angle in the upper limb. With many brands emerging on the market, each with variations in hardware and protocols, evidence to inform selection and application is needed. Therefore, the objectives of this review were related to the use of wearable sensors to calculate upper limb joint angle. We aimed to describe (i) the characteristics of commercial and custom wearable sensors, (ii) the populations for whom researchers have adopted wearable sensors, and (iii) their established psychometric properties.
Methods: A systematic review of literature was undertaken using the following data bases: MEDLINE, EMBASE, CINAHL, Web of Science, SPORTDiscus, IEEE, and Scopus. Studies were eligible if they met the following criteria: (i) involved humans and/or robotic devices, (ii) involved the application or simulation of wearable sensors on the upper limb, and (iii) calculated a joint angle.
Results: Of 2191 records identified, 66 met the inclusion criteria. Eight studies compared wearable sensors to a robotic device and 22 studies compared to a motion analysis system. Commercial (n = 13) and custom (n = 7) wearable sensors were identified, each with variations in placement, calibration methods, and fusion algorithms, which were demonstrated to influence accuracy.
Conclusion: Wearable sensors have potential as viable instruments for measurement of joint angle in the upper limb during active movement. Currently, customised application (i.e. calibration and angle calculation methods) is required to achieve sufficient accuracy (error < 5°). Additional research and standardisation is required to guide clinical application.
Trial registration: This systematic review was registered with PROSPERO ( CRD42017059935 ).
ENabling VISions And Growing Expectations (ENVISAGE): Parent reviewers' perspectives of a co-designed program to support parents raising a child with an early-onset neurodevelopmental disabilityLaura Miller, Grace Nickson, Kinga Pozniak, Debra Khan, Christine Imms, Jenny Ziviani, Andrea Cross, Rachel Martens, Vicki Cavalieros, Peter Rosenbaum
Affiliations expand
- PMID: 34942443
- DOI: 10.1016/j.ridd.2021.104150
Abstract
Aims: This study reports parents' perspectives of, ENVISAGE: ENabling VISions And Growing Expectations. ENVISAGE - co-designed by parents and researchers - is an early intervention program for parents raising children with neurodisability.
Methods and procedures: Using an integrated Knowledge Translation approach, this feasibility study explored parents' perspectives of the comprehensibility, acceptability, and usability of ENVISAGE workshops. Participants were Australian and Canadian parents of children with neurodisabilities, ≥12 months post-diagnosis, who independently reviewed ENVISAGE workshops using an online learning platform. Parents completed study-specific 5-point Likert-scaled surveys about individual workshops. Following this, qualitative interviews about their perceptions of ENVISAGE were conducted. Survey data were analysed descriptively, and interviews analysed inductively using interpretive description.
Outcomes and results: Fifteen parents completed surveys, of whom 11 participated in interviews. Workshops were reported to be understandable, relevant, and meaningful to families. ENVISAGE was judged to empower parents through enhancing knowledge and skills to communicate, collaborate and connect with others. Pragmatic recommendations were offered to improve accessibility of ENVISAGE.
Conclusions and implications: ENVISAGE workshops address key issues and concerns of parents of children with neurodisability in a way that was perceived as empowering. Involving parents as reviewers enabled refinement of the workshops prior to the pilot study.
Reframe the Behaviour: Evaluation of a training intervention to increase capacity in managing detained youth with fetal alcohol spectrum disorder and neurodevelopmental impairmentsHayley M Passmore, Raewyn C Mutch, Rochelle Watkins, Sharyn Burns, Guy Hall, James Urquhart, Jonathan Carapetis, Carol Bower
Affiliations expand
- PMID: 35530127
- PMCID: PMC9067986
- DOI: 10.1080/13218719.2020.1780643
Free PMC article
Abstract
The first study to investigate the prevalence of fetal alcohol spectrum disorder (FASD) within an Australian juvenile detention centre has identified the highest known prevalence of FASD among a justice-involved population worldwide. However, there has been limited investigation into the capacity of the custodial workforce to identify and manage young people in Australian detention centres with FASD or other neurodevelopmental impairment (NDI), and no published interventions aiming to develop environments appropriate for those with FASD in justice settings.
Using the Template for Intervention Description and Replication checklist, this study describes the conception, implementation and evaluation of a training intervention aiming to upskill the custodial workforce in the management of youth with FASD and NDI; 117 staff participated in the intervention, and 109 completed pre- and post-intervention surveys. Improvements were seen across almost all knowledge and attitude items, and the intervention was considered highly necessary, appropriate and valuable by the workforce.
The Neurological Hand Deformity Classification: Construct validity, test-retest, and inter-rater reliabilitySimon Garbellini, Melinda Randall, Michael Steele, Catherine Elliott, Christine Imms
Abstract
Background: The Neurological Hand Deformity Classification (NHDC) is an impairment-based tool that classifies hand deformity into one of two ordinal scales: flexion or extension deformities. Classification is made from live observation or from recorded video footage. Differentiation between the levels is determined by wrist position and wrist and finger movement.
Purpose: To examine aspects of validity and reliability of the NHDC.
Study design: A measurement study design.
Methods: Data from a convenience sample of 127 children with cerebral palsy, 66 males: 61 females, ranging in age from 8 months to 15 years, across all Manual Ability Classification System levels I to V, were analyzed. Construct validity was assessed by testing predetermined hypotheses of relationships between the NHDC and measures of body function and activity measures with observed performance using the Chi Squared Test of Independence and Spearman Correlation Coefficient. Test-retest and inter-rater reliability were assessed by calculating agreement between repeated measures and paired raters using weighted kappa and Cohen's kappa with 95% confidence intervals.
Results: Predicted hypotheses for the NHDC were met in nine of 10 Spearman's rho correlations with body structure measures and in 2 of 7 correlations with activity measures. Test-retest for flexion deformities: κw = 0.84; 95% CI 0.70-0.98; and extension deformities: κ = 1.0; 95% CI 1.0-1.0 was good to excellent; inter-rater reliability for flexion deformities: κw = 0.76; 95% CI 0.67-0.85; and extension deformities κ = 0.75; 95% CI 0.43-1.0 was moderate to excellent.
Conclusion: Expected relationships between the NHDC and other measures, stability between repeated measures and acceptable between-rater agreement supports confidence classifying hand deformity in children with cerebral palsy with the NHDC.
SPORTS STARS: a practitioner-led, peer-group sports intervention for ambulant children with cerebral palsy. Activity and participation outcomes of a randomised controlled trialGeorgina L Clutterbuck, Megan L Auld, Leanne M Johnston
Abstract
Purpose: To investigate the effectiveness of a practitioner-led, peer-group sports intervention for children with CP at GMFCS Level I-II.
Method: Children with CP (GMFCS I-II; 6-12 years) were randomised to Sports Stars or waitlist-control groups. Sports Stars included eight-weeks (eight hours) of physiotherapist-led, sports-specific gross motor activity training, sports education, teamwork development and confidence building. Sports participation was measured using self-identified participation goals (modified Canadian Occupational Performance Measure (mCOPM)). Physical competence was measured with mCOPM activity goals and high-level gross motor batteries (Test of Gross Motor Development (TGMD-2); GMFM-Challenge) and walking (Timed-Up-and-Go), running (Muscle Power Sprint Test; 10x5m Sprint Test), jumping (Standing Broad Jump; Vertical Jump) and throwing (Seated Throw) items. General participation and quality of life were also measured. Outcomes were measured pre, post and 12-weeks post-intervention. Data were analysed using linear mixed models.
Results: Fifty-four children were randomised into Sports Stars (n = 29; GMFCS I = 7, II = 22; male = 19; 8.9 ± 2 years) or waitlist-control groups (n = 25; GMFCS I = 10, II = 15; male = 14; 8.6 ± 2 years). The Sports Stars group improved sports participation and activity goals (mCOPM F = 5.49-10.29, p < 0.001) and sports-specific physical competence (TGMD-2, F = 3.45-5.19, p = 0.001-0.009) compared to the waitlist-control.
Conclusion: Sports Stars is effective for improving sports-specific participation and physical competence for children with CP.Implications for rehabilitationSports Stars improves performance and satisfaction in sports-specific participation and activity goals for ambulant children with CP.Sports Stars improves sports-specific physical activity competence in locomotor and object control skills.Sport-specific interventions should incorporate sport-specific gross motor activity training as well as sports education, confidence building and teamwork.
Peer mentor training: Pathway to competency for facilitators of Healthy Mothers Healthy Families workshopsHelen M. Bourke-Taylor, Sarah Grzegorczyn, Kahli S. Joyce
Abstract
Background
Healthy Mothers Healthy Families (HMHF) is a women's health and empowerment programme designed to promote the health and well-being of mothers of children with a disability. An ongoing need to extend the reach of HMHF to more mothers, and increase scalability, resulted in development of a training programme based in principles of adult and transformative learning, to credential mothers as HMHF facilitators. The current study evaluated the process and outcomes of the competency training programme for new facilitators.
Methods
A pretest and posttest design with midway data collection point was implemented to evaluate the facilitators' competence following the training programme. Surveys contained specifically designed demographic questions, open-ended questions, self-report of competency and estimation of need for education/training. Fifteen predetermined criteria enabled self-ratings. Training of facilitators occurred alongside delivery of 23-day HMHF workshops. Workshop participants provided anonymous objective evaluation of the facilitators' competencies. Triangulation enabled comparison of self-ratings, workshop participant ratings and author evaluation of new facilitators.
Results
Facilitators (N = 7) completed all theory and practical elements of the HMHF facilitator education package and were successfully credentialed in May 2020. Overall, facilitators' competency ratings were highest at Time 3, which followed successful co-facilitation of at least three HMHF workshops. As expected, facilitators rated their highest need for education/training at baseline. At Time 3, facilitators self-reported a lower need for education/training for all competency criteria. All facilitators received mean anonymous competency ratings from workshop participants (N = 294), above the predetermined benchmark that was required to become credentialled.
Conclusions
The HMHF competency training programme, based on principles of adult and transformative learning, was effective in training seven HMHF facilitators who were mothers and had suitable professional backgrounds to deliver HMHF workshops. Training supports the fidelity of the HMHF intervention. Further research to evaluate maternal outcomes for participants attending the facilitator-lead workshops is warranted.
Multiple doses of umbilical cord blood cells improve long-term brain injury in the neonatal ratTayla R Penny, Yen Pham, Amy E Sutherland, Jamie G Mihelakis, Joohyung Lee, Graham Jenkin, Michael C Fahey, Suzanne L Miller, Courtney A McDonald
Abstract
Background: Hypoxic ischemic (HI) insults during pregnancy and birth can result in neurodevelopmental disorders, such as cerebral palsy. We have previously shown that a single dose of umbilical cord blood (UCB) cells is effective at reducing short-term neuroinflammation and improves short and long-term behavioural outcomes in rat pups. A single dose of UCB was not able to modulate long-term neuroinflammation or brain tissue loss. In this study we examined whether multiple doses of UCB can modulate neuroinflammation, decrease cerebral tissue damage and improve behavioural outcomes when followed up long-term.
Methods: HI injury was induced in postnatal day 10 (PND10) rat pups using the Rice-Vannucci method of carotid artery ligation. Pups received either 1 dose (PND11), or 3 doses (PND11, 13, 20) of UCB cells. Rats were followed with behavioural testing, to assess both motor and cognitive outcomes. On PND50, brains were collected for analysis.
Results: HI brain injury in rat pups caused significant behavioural deficits. These deficits were significantly improved by multiple doses of UCB. HI injury resulted in a significant decrease in brain weight and left hemisphere tissue, which was improved by multiple doses of UCB. HI resulted in increased cerebral apoptosis, loss of neurons and upregulation of activated microglia. Multiple doses of UCB modulated these neuropathologies. A single dose of UCB at PND11 did not improve behavioural or neuropathological outcomes.
Conclusions: Treatment with repeated doses of UCB is more effective than a single dose for reducing tissue damage, improving brain pathology and restoring behavioural deficits following perinatal brain injury.
The science of persuasion and communication
When it comes to communication, crafting messages, harnessing the power of people and providing support around healthy living through health promotional strategies, it is important to understand that there is a whole body of work and science behind motivation.
Evidence tells us that those services/programs/initiatives are only useful if people adhere to and engage with them. A wonderful example of this is the work that has been done by PAHL (Psychology of Active Healthy Living)
https://www.jcu.edu.au/pahl
The science and research PAHL undertakes is around understanding what helps or stops people from engaging in health promotion initiatives. For example, losing weight, eating better, being more physically active.
PAHL’s work is in the development and delivery of the health promotion initiatives, underpinned by Ben and his team’s understanding of motivation, communication and persuasion, social support and resilience/dealing with setbacks.
So what we talked about with Ben in this episode is the science of persuasion and communication. There are some fantastic key takeaways that we can incorporate into the way we, as clinicians, communicate information, the evidence for why we do what we do along with the careful guidance we provide for families that we work with.
The Experience of Locomotor Training From the Perspectives of Therapists and Parents of Children With Cerebral PalsyDayna Pool 1,2,3*, Catherine Elliott 1,3,4, Claire Willis 5 and Ashleigh Thornton 4,6
- 1 School of Allied Health, Curtin University, Perth, WA, Australia
- 2 The Healthy Strides Foundation, Perth, WA, Australia
- 3 Telethon Kids Institute, Perth, WA, Australia
- 4 Perth Children's Hospital, Perth, WA, Australia
- 5 School of of Allied Health, Human Services and Sport, La Trobe University, Melbourne, VIC, Australia
- 6 UWA Medical School, The University of Western Australia, Perth, WA, Australia
Objective: The objective of this study was to explore the experiences of intensive locomotor training from the perspective of therapists and parents of children with cerebral palsy.
Design: A qualitative study using semi-structured interviews was employed to capture perspectives following an intensive locomotor training intervention. Data were analyzed thematically, systematically coding and interpreted by grouping information into themes and sub-theme categories.
Participants: Five therapists and seven parents of children with high daily physical assistance and equipment needs participated in the study.
Setting: A pediatric tertiary hospital.
Results: Experiences of locomotor training were described with relation to the suitability of locomotor training with sub-themes of intervention length and time, engagement within sessions, the importance of support, and the utility of locomotor training beyond a research context. Motivation for participating in locomotor training was described in relation to the enjoyment of movement and for increasing activity level. The barriers and facilitators who participated in locomotor training provided environmental and personal factor subthemes. Finally, the outcomes from the intervention were related to improvements in physical health, sleep, affect and emotion, and ambulation in daily activities.
Conclusion: The experience of intensive locomotor training from the perspectives of parents of children who have high physical assistance and equipment needs and the therapists providing the intervention was described. Future studies should consider outcome measures beyond motor capacity to quantify the perceived outcomes of interventions that are meaningful to families.
After Producer Ed gave us his highlights, the Dr's are back to host the final episode of Season 1 of the ResearchWorks podcast!
Far from just being a highlights show, we cover off not just the amazing guests we've hosted, interviewed, interrogated and had the immense privilege of speaking with but we break them down for you into the various themes and content groups.
If you missed an episode, if you were trying to remember which topics we covered off, if you wanted to know just how the F-words (all the G-rated ones) fit into each episode, then this one is for you.
Be warned though - Ed just makes a cameo appearance in this one!
But Dayna, Ash, Ed and some incredible guests from all over the globe will be back in Season 2 of the pod in early 2022!
Merry Christmas, a Happy New Year and thank you to all the thousands of listeners who have come along for the ride with the RW team in 2021. It is our pleasure to bring this content to you - it will continue to remain free of charge - we would encourage you to share the pod, leave us a review (it will help others to find the pod) and even drop the team an email - we'd love to hear from you.
It's the penultimate episode of Season 1 of the ResearchWorks podcast!
We've had an incredible time interviewing researchers from across the globe. Thank to our many thousands of listeners - we hope you get as much joy from listening to our episodes as we do making them!
Ash and Dayna will return with one final episode next week before a well deserved Summer/Christmas and New Year break and the team will return in 2022 with some fantastic guests, even better icebreaker questions, amazing Q and A's with authors from around the world and of course, more of your very favourite "Tell it to Ed" segments! ;)
KONTAKT® social skills group training for Australian adolescents with autism spectrum disorder: a randomized controlled trial
Bahareh Afsharnejad, Marita Falkmer, Melissa H Black, Tasha Alach, Fabian Lenhard, Anna Fridell, Christina Coco, Kelly Milne, Sven Bölte, Sonya Girdler
- PMID: 34052908
- DOI: 10.1007/s00787-021-01814-6
AbstractWhile there is a large body of evidence drawn from randomised controlled trials supporting the efficacy of SSGT in autistic adolescents, the control arms of these studies are almost exclusively treated either as usual or waitlist. Addressing this limitation, 90 verbal autistic adolescents (70% male) aged 12-17 years (M = 13.77, SD = 1.6) with IQ > 70 participated in this pragmatic two-armed randomised controlled trial design study evaluating the efficacy of sixteen 90-min sessions of SSGT KONTAKT® (n = 46) in comparison to a manualised interactive group cooking programme (n = 44) of equal dosage controlling for the potentially confounding effects of exposure to a social group context.
The primary outcome was the adolescents' progress towards achieving their personally meaningful social goals at follow-up. Secondary outcomes were changes in autistic traits, quality of life, facial emotion recognition skills, social anxiety, and loneliness. Assessments were conducted at baseline, post intervention and 12-week follow-up. The interaction between time point and group allocation was investigated through a random-effects regression model (linear mixed model) to examine changes in the dependent outcomes.
While intention-to-treat analysis (N = 90) demonstrated that both SSGT (ES = 1.36, p < .001) and active control (ES = 1.10, p < .001) groups made progress towards their personally meaningful social goals at follow-up, KONTAKT® participants demonstrated greater progress in social goal attainment than their peers in the active control group (ES = 0.35, p = .04).
Findings suggest that KONTAKT® is efficacious in supporting autistic adolescents to achieve their personally meaningful social goals compared to other prosocial group activities.
Trial registration:
(1) Australian New Zealand Clinical Trials Registry (ANZCTR): ACTRN12617001117303, registered 31 July 2017, anzctr.org.au
(2) ClinicalTrials.gov: NCT03294668 registered 22 September 2017, https://clinicaltrials.gov
A Randomised Controlled Trial of an Information Communication Technology Delivered Intervention for Children with Autism Spectrum Disorder Living in Regional Australia
Dave Parsons, Reinie Cordier, Hoe Lee, Torbjorn Falkmer, Sharmila Vaz
- PMID: 30209645
- DOI: 10.1007/s10803-018-3734-3
Abstract
This exploratory randomised controlled trial tested the effectiveness of a tablet-based information communication technology early intervention application to augment existing therapy with the aim of improving visual motor, imitation, language and social skills in young children with ASD who reside in regional areas.
Fifty-nine participants were recruited and randomised to either a therapy-as-usual group or intervention group. With the exception of the expressive language subscale on the Mullen Scales of Early Learning, no significant between-group differences were recorded for visual motor, imitation, receptive language and social skills of participants between baseline and post-intervention.
When all participants were pooled and measured over time, improvements were shown in receptive and pragmatic language and social skills; these gains were maintained, thus suggesting skill acquisition.
Microstructural changes in the spinal cord of adults with cerebral palsyMichael P Trevarrow, Sarah E Baker, Tony W Wilson, Max J Kurz
Abstract
Aim: To quantify the microstructural differences in the cervical-thoracic spinal cord of adults with cerebral palsy (CP).
Method: Magnetic resonance imaging of the proximal spinal cord (C6-T3) was conducted on a cohort of adults with CP (n=13; mean age=31y 11mo, standard deviation [SD] 8y 7mo; range=20y 8mo-47y 6mo; eight females, five males) and population norm adult controls (n=16; mean age=31y 4mo, SD 9y 9mo; range=19y 4mo-49y 5mo; seven females, nine males). The cross-sectional area (CSA) of the spinal cord, gray and white matter, magnetization transfer ratio (MTR), and fractional anisotropy of the cuneatus and corticospinal tracts were calculated.
Results: The total spinal cord CSA and proportion of the spinal cord gray matter CSA were significantly decreased in the adults with CP. The corticospinal tracts' MTR was lower in the adults with CP. Individuals that had reduced gray matter also tended to have reduced MTR in their corticospinal tracts (r=0.42, p=0.029) and worse hand dexterity clinical scores (r=0.53, p=0.004).
Interpretation: These results show that there are changes in the spinal cord microstructure of adults with CP. Ultimately, these microstructural changes play a role in the extent of the hand sensorimotor deficits seen in adults with CP. What this paper adds Adults with cerebral palsy (CP) have a reduced spinal cord cross-sectional area (CSA). Spinal cord gray matter is reduced in adults with CP. Spinal cord CSA is associated with hand dexterity. Magnetization transfer ratio of corticospinal tracts was lower in adults with CP.
Randomised Controlled Trial of a Therapeutic Playgroup for Children with Developmental DelaysJodie Armstrong , Sonya Girdler, Emma Davidson, Joanne Mizen, Natasha Bear, John Wray, Catherine Elliott
- PMID: 32623539
- DOI: 10.1007/s10803-020-04580-7
Abstract
A single-blind randomised control trial investigated the effectiveness of the Learn, Engage and Play (LEaP) playgroup. Seventy-one children with developmental delay were randomly allocated to an 8-week LEaP playgroup or control group and followed up at 12 and 28 weeks.
On the primary outcome measure, LEaP demonstrated significant within group changes at 28 weeks (parenting distress p = 0.018) but no between group changes.
On secondary outcome measures, at 12 weeks LEaP produced significantly better outcomes than control in goal achievement (performance p = 0.022; function p = 0.008) and family-support (p = 0.024), with LEaP continuing to demonstrate significantly better goal achievement (child performance p = 0.042; function p = 0.012) at 28 weeks.
Findings indicate LEaP may assist in improving family-support and goal achievement outcomes for children with developmental delays.
Keywords: Developmental delay; Early intervention; Randomised control trial; Therapeutic playgroups.
Task-specific training for bicycle-riding goals in ambulant children with cerebral palsy: a randomized controlled trialRachel A M Toovey,Adrienne R Harvey,Jennifer L McGinley,Katherine J Lee,Sophy T F Shih,Alicia J Spittle,
https://doi.org/10.1111/dmcn.15029
Abstract
Aim
To determine whether a task-specific physiotherapist-led training approach is more effective than a non-specific parent-led home programme for attaining bicycle-riding goals in ambulant children with cerebral palsy (CP).
Method
Sixty-two ambulant children with CP aged 6 to 15 years (33 males, 29 females, mean age 9y 6mo) with bicycle-riding goals participated in this multi-centre, assessor-blind, parallel-group, superiority randomized controlled trial. Children in the task-specific group participated in a physiotherapist-led, group-based, intensive training programme. Children in the parent-led home group were provided with a practice schedule, generic written information, and telephone support. Both programmes involved a 1-week training period. The primary outcome was goal attainment at 1 week after training measured using the Goal Attainment Scale. Secondary outcomes included bicycle skills, participation in bicycle riding, functional skills, self-perception, physical activity, and health-related quality of life at 1 week and 3 months after training.
Results
Children in the task-specific training group had greater odds of goal attainment than those in the parent-led home programme at 1 week after intervention (odds ratio [OR] 10.4, 95% confidence interval [CI] 2.8–38.6), with evidence for superiority retained at 3 months (OR 4.0, 95% CI 1.3–12.5).
Interpretation
The task-specific physiotherapist-led training approach was more effective for attaining bicycle-riding goals than a non-specific parent-led home programme in ambulant children with CP.
The paradox of normalization through rehabilitation: growing up and growing older with cerebral palsyLaura R Moll , Cheryl A Cott
- PMID: 23066918
- DOI: 10.3109/09638288.2012.726689
Abstract
Purpose: To examine the experience of normalization through rehabilitation for persons growing up & growing older with lifelong physical impairment (cerebral palsy [CP]).
Method: A qualitative methodology consisting of narrative inquiry informed by the Life Course Perspective. Multiple (3-4), in-depth interviews were completed with each participant in order to co-construct their life stories. Data were systematically compared for themes and categories, as well as the central plot that weaves the participants' experiences together.
Results: Nine community-dwelling individuals (three men; six women), aged 26-70, with mild to severe CP participated. Their common narrative involved intensive rehabilitation in childhood that focused on "normalizing" movement, particularly walking. In adolescence they were deemed to have achieved their functional potentials and "nothing further could be done". After transitioning out of pediatric health services many start to lose the gains they achieved in rehabilitation (particularly around walking). In their 30's and 40's they begin to slow down and lose functional abilities but no longer have access to rehabilitation to help them manage their aging bodies.
Conclusions: Many of the assumptions that underlie the organization and delivery of rehabilitation services for people with long term impairments may contribute to difficulties encountered in adulthood and old age by focusing on normalizing physical function at the expense of learning to manage their bodies across the life course.
Implications for rehabilitation: • The way that rehabilitation services are organized and delivered for people with lifelong impairments needs to be re-considered. • Frontloading rehabilitation in childhood does not meet the long term needs of children growing up and growing older with physical impairments. As they grow up and grow older, they lose many of the gains they achieved in rehabilitation yet they have nowhere to turn to receive rehabilitation for their aging bodies. • The focus on normalizing function in childhood may only serve to emphasize the child’s lack of ablebodiedness to the detriment of their sense of self and wellbeing.
Deep brain stimulation for cerebral palsy: where are we now?Terence D Sanger
Affiliations expand
- PMID: 31211420
- DOI: 10.1111/dmcn.14295
Free article
Abstract
in English, Spanish, Portuguese
Cerebral palsy (CP) is a complex disorder and children frequently have multiple impairments. Dystonia is a particularly frustrating impairment that interferes with rehabilitation and function and is difficult to treat.
Of the available treatments, deep brain stimulation (DBS) has emerged as an option with the potential for large effect size in a subgroup of children. While brain stimulation has been used in CP for more than 40 years, modern devices and targeting methods are improving both the safety and efficacy of the procedure.
Successful use of DBS depends on appropriate selection of patients, identification of effective neuroanatomical targets in each patient, careful neurosurgical procedure, and detailed follow-up evaluation and programming. The use of functional neurosurgery for neuromodulation in CP remains a technology in its infancy, but improving experience and knowledge are likely to make this one of the safest and most effective interventions for children with moderate-to-severe motor disorders.
This review summarizes the current procedures for patient and target selection, and surgical implantation of DBS electrodes for CP. The history of DBS and future directions when used in secondary dystonia are also examined.
What this paper adds: Selection of candidates for deep brain stimulation (DBS) requires understanding of dystonia in cerebral palsy . DBS could become a first-line treatment option in some children.
Interventions to improve physical function for children and young people with cerebral palsy: international clinical practice guidelineMichelle Jackman, Leanne Sakzewski, Catherine Morgan, Roslyn N Boyd, Sue E Brennan, Katherine Langdon, Rachel A M Toovey, Susan Greaves, Megan Thorley, Iona Novak,
First published: 21 September 2021
https://doi.org/10.1111/dmcn.15055Abstract
Aim
To provide recommendations for interventions to improve physical function for children and young people with cerebral palsy.
Method
An expert panel prioritized questions and patient-important outcomes. Using Grading of Recommendations Assessment, Development and Evaluation (GRADE) methods, the panel assessed the certainty of evidence and made recommendations, with international expert and consumer consultation.
Results
The guideline comprises 13 recommendations (informed by three systematic reviews, 30 randomized trials, and five before–after studies). To achieve functional goals, it is recommended that intervention includes client-chosen goals, whole-task practice within real-life settings, support to empower families, and a team approach. Age, ability, and child/family preferences need to be considered. To improve walking ability, overground walking is recommended and can be supplemented with treadmill training. Various approaches can facilitate hand use goals: bimanual therapy, constraint-induced movement therapy, goal-directed training, and cognitive approaches. For self-care, whole-task practice combined with assistive devices can increase independence and reduce caregiver burden. Participation in leisure goals can combine whole-task practice with strategies to address environmental, personal, and social barriers.
Interpretation
Intervention to improve function for children and young people with cerebral palsy needs to include client-chosen goals and whole-task practice of goals. Clinicians should consider child/family preferences, age, and ability when selecting specific interventions.
Environmental enrichment intervention for Rett syndrome: an individually randomised stepped wedge trialJenny Downs, Jenny Rodger, Chen Li , Xuesong Tan, Nan Hu, Kingsley Wong , Nicholas de Klerk , Helen Leonard
Affiliations expand
- PMID: 29321033
- PMCID: PMC5764021
- DOI: 10.1186/s13023-017-0752-8
- Free PMC article
Abstract
Background: Rett syndrome is caused by a pathogenic mutation in the MECP2 gene with major consequences for motor and cognitive development. One of the effects of impaired MECP2 function is reduced production of Brain Derived Neurotrophic Factor (BDNF), a protein required for normal neuronal development. When housed in an enriched environment, MECP2 null mice improved motor abilities and increased levels of BDNF in the brain. We investigated the effects of environmental enrichment on gross motor skills and blood BDNF levels in girls with Rett syndrome.
Methods: A genetically variable group of 12 girls with a MECP2 mutation and younger than 6 years participated in a modified individually randomised stepped wedge design study. Assessments were conducted on five occasions, two during the baseline period and three during the intervention period. Gross motor function was assessed using the Rett Syndrome Gross Motor Scale (maximum score of 45) on five occasions, two during the baseline period and three during the intervention period. Blood levels of BDNF were measured at the two baseline assessments and at the end of the intervention period. The intervention comprised motor learning and exercise supplemented with social, cognitive and other sensory experiences over a six-month period.
Results: At the first assessment, the mean (SD) age of the children was 3 years (1 year 1 month) years ranging from 1 year 6 months to 5 years 2 months. Also at baseline, mean (SD) gross motor scores and blood BDNF levels were 22.7/45 (9.6) and 165.0 (28.8) ng/ml respectively. Adjusting for covariates, the enriched environment was associated with improved gross motor skills (coefficient 8.2, 95%CI 5.1, 11.2) and a 321.4 ng/ml (95%CI 272.0, 370.8) increase in blood BDNF levels after 6 months of treatment. Growth, sleep quality and mood were unaffected.
Conclusions: Behavioural interventions such as environmental enrichment can reduce the functional deficit in Rett syndrome, contributing to the evidence-base for management and further understanding of epigenetic mechanisms. Environmental enrichment will be an important adjunct in the evaluation of new drug therapies that use BDNF pathways because of implications for the strengthening of synapses and improved functioning.
Trial registration: ACTRN12615001286538 .
Keywords: BDNF; Environmental enrichment; Neurodevelopmental disorder; Neuroplasticity; Rett syndrome.
Thank you for listening to the ResearchWorks podcast! It's our pleasure to bring you the behind the scenes stories and interviews with some of the best researchers from Australia and across the globe!
Dr Ash and Dr Dayna are currently on a mid-season break but stay tuned for a special announcement about our future plans, the CPD reporting for 2021 and some amazing stats about the Pod!
We do it all for our amazing community, in our spare time and it's all about bringing Evidence Based Practice (EBP) to the fore. The whole point of EBP is to combine empirical/scientific information with clinical expertise, combined again with the values of the patient/client/child and family.
The "consumer" should always be at the heart of everything that we do and we should always remember our priorities - it helps us to stay really motivated to find better solutions to improve patient care.
Season 2 will begin in a couple of weeks time and we hope you can join us once again!
Clinical utilisation of the Infant Monitor of vocal Production (IMP) for early identification of communication impairment in young infants at-risk of cerebral palsy: a prospective cohort study
R Ward, N Hennessey, E Barty, C Elliott, J Valentine & R Cantle Moore
ABSTRACT
Aim: To report prospective longitudinal data of early vocalisations of infants identified “at-risk” of cerebral palsy (CP) for early identification of communication impairment.
Method: This case-control longitudinal prospective cohort study reports on the assessment of 36 infants, 18 identified as at-risk of CP at the time of enrolment and 18 typically developing (TD) children, at three time points: 6 months, 9 months and 12 months of age, Data were obtained through criterion and norm referenced assessments of vocalisation behaviours.
Results: Early vocal behaviours of infants identified as at-risk of CP did not differ from their age matched peers at 6 months of age, however, significant group differences emerged at 9 and 12 months when pre-canonical and canonical babble typically emerge. Generalised linear mixed models analysis showed that the rate of development of early language ability and more complex speech-related vocal behaviours was slower for infants at risk of CP when compared to TD infants, with over 75% of infants with CP showing below normal vocal production and impaired language by 12 months of age.
Interpretation: Our data suggest characteristics of infant vocalisations associated with pre-canonical and canonical babbling provide a strong evidence base for predicting communication outcomes in infants at risk of CP.
https://doi.org/10.1080/17518423.2021.1942280
Let's make pediatric physical therapy a true evidence-based field! Can we count on you?
Egmar Longo, Ana Carolina de Campos, and Robert J. Palisano
It has been five years since the publication of the systematic review by Novak et al.1 that reported levels of evidence for 64 interventions for children with cerebral palsy (CP) across the world – green light (do it), yellow light (moderate evidence – assess the results) and lack of evidence (don’t do it). We are challenged to think about what has changed in the national and international scenario: are we the same physical therapists as 5, 10, or 20 years ago? Have we changed our practice to keep up with best evidence and family-centered services that engage children and families in goal-setting and intervention planning?
Our reflection today is: which side do you support? Are you a knowledge-broker or an active resistor? We need more activists to change the current scenario. Together we can promote evidence-based practice in pediatric physical therapy and give all children and families the best care that they deserve. Can we count on you?
IMPACT FOR DCD (Developmental Coordination Disorder) Names of Investigators:Dr Melissa Licari, Dr Jacqueline Williams, Dr Gail Alvares, Charmain Bernie, Wesley Billingham, Dr Paola Chivers, Dr Matthew Cooper, Georgina Earl, A/Prof Jenny Downs, Brian Elbers, Samantha Elbers, Prof Catherine Elliott, Dr Kiah Evans, Dr Tamika Heiden, Dr Leanne Lester, A/Prof Fleur McIntyre, Dr Sarah McIntyre, Prof Jan Piek, Sarah Pillar, Dr Siobhan Reid, Dr Jess Reynolds, Prof Alicia Spittle, Dr Renee Teal, Dr Ashleigh Thornton, Prof Andrew Whitehouse
What is Impact for DCD?Impact for DCD is the largest survey conducted to identify the challenges experienced by children with Developmental Coordination Disorder (DCD) and their families. This national survey (based on N=443 children 4-18 years) examined challenges relating to obtaining a diagnosis, impact of the disorder on activity and participation, difficulties encountered in the school environment, access to therapy, and the social and emotional impacts on the child and their family.
What did the Impact for DCD report tell us?There is no consistent terminology or standardised practice for the diagnosis of DCD in Australia. Many children are not receiving a diagnosis until two to four years after seeking help.
More than half of families (58%) do not have access to funding to support the cost of therapy and many reported (53%) that accessing therapy caused financial strain.
Parents reported that teacher knowledge and awareness of DCD is the greatest challenge at school. Many parents felt their child’s learning needs were not being met. One in four parents reported that their child did not enjoy going to school and 62% of children had difficulty making friends.
Almost all parents (92%) were concerned about the impact their child’s movement difficulties were having on their social and emotional health. Two thirds of children scored in the clinically concerning ranges for emotional symptoms and peer problems. Many parents (74%) reported experiencing frequent emotional worry about their child’s movement difficulties and 78% of parents were concerned about their child’s future.
Based on the findings of the Impact for DCD survey and the priority areas identified by families completing the survey, we have provided a list of key recommendations which were developed in collaboration with family and professional reference groups.
Mental wellbeing in non-ambulant youth with neuromuscular disorders: What makes the difference?Vivienne Travlos , Jenny Downs , Andrew Wilson , Dana Hince , Shane Patman
- PMID: 30606465
- DOI: 10.1016/j.nmd.2018.08.013
AbstractThe physical and social challenges associated with neuromuscular disorders may impact mental wellbeing in non-ambulant youth during the more vulnerable period of adolescence. This cross-sectional survey investigated non-ambulant youths' mental wellbeing and relationships with physical health, participation and social factors.
The conceptual model was the International Classification of Functioning, Disability and Health (ICF). Thirty-seven youth aged 13-22 years old (mean age 17.4 years; n = 30 male; n = 24 Duchenne Muscular Dystrophy) and their parents provided biopsychosocial data through a comprehensive self-report questionnaire.
The primary outcome measure was the Warwick Edinburgh Mental Wellbeing Scale (WEMWBS). Relationships between mental wellbeing and variables within and across each ICF domain were explored using linear regression models. Mean WEMWBS scores (55.3/70 [SD 8.1]) were higher than for typically developing youth and comparable to youth with other chronic conditions. Over half of youth reported severe co-morbidities across all body systems.
Multivariable modelling indicated that mental wellbeing was independently associated with academic achievement and perceived family support but not with physical health variables. Beyond management of physical co-morbidities, enabling youths' educational attainment and attending to social support likely optimises youth's wellbeing.
DIGIT-ALL: RARE DISEASES
Rare Diseases - a 2 part special!
Rare diseases are increasingly recognised as a global public health priority and contribute to significant and disproportionately high health system impacts. Accordingly, they present clinical and public health challenges, as well as opportunities for digital health solutions across the lifespan, including improved diagnosis, treatment, navigation and care coordination, and integration and coordination for broader societal and patient wellbeing. People living with rare diseases, individually and cumulatively, are digital disruptors.
In this manuscript the authors describe some of the unique dynamics of the rare disease domain as they currently, or have the potential to in the future, apply to digital health; highlight some recent international rare diseases digital health initiatives; and touch upon implications for those with more common disorders.
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).
DIGIT-ALL: RARE DISEASES
Rare Diseases - a 2 part special!
Rare diseases are increasingly recognised as a global public health priority and contribute to significant and disproportionately high health system impacts. Accordingly, they present clinical and public health challenges, as well as opportunities for digital health solutions across the lifespan, including improved diagnosis, treatment, navigation and care coordination, and integration and coordination for broader societal and patient wellbeing. People living with rare diseases, individually and cumulatively, are digital disruptors.
In this manuscript the authors describe some of the unique dynamics of the rare disease domain as they currently, or have the potential to in the future, apply to digital health; highlight some recent international rare diseases digital health initiatives; and touch upon implications for those with more common disorders.
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).
Changes in walking ability, intellectual disability, and epilepsy in adults with cerebral palsy over 50 years: a population-based follow-up studyUlrica Jonsson, Meta Nyström Eek, Katharina Stibrant Sunnerhagen, Kate Himmelmann
- PMID: 33772773
- DOI: 10.1111/dmcn.14871
**Abstract
Aim:** To determine if walking ability and presence of intellectual disability and epilepsy change from childhood to 50 years of age in individuals with cerebral palsy (CP), and if such changes are related to age, sex, or CP subtype.
Method: This was a population-based follow-up study of 142 adults born from 1959 to 1978 (82 males, 60 females; mean age 48y 4mo, range 37-58y; 44% unilateral, 35% bilateral, 17% dyskinetic, and 4% ataxic CP) listed in the CP register of western Sweden. We compared childhood data with a follow-up assessment in 2016.
Results: At follow-up, walking ability had changed significantly (p<0.001). The proportion of participants walking without aids had decreased from 71% to 62%, and wheelchair ambulation increased from 18% to 25%. Walking ability was related to subtype (p=0.001), but not to age, sex, pain, fatigue, or body mass index. The proportion classified as having intellectual disability had increased from 16% to 22% (p=0.039) and the proportion with epilepsy from 9% to 18% (p=0.015). Of those with childhood epilepsy, 46% were seizure-free without medication.
Interpretation: Walking ability and the presence of intellectual disability and epilepsy had changed significantly since childhood. Life-long access to specialized health care is warranted for re-evaluation of impairments, treatment, and assistance. What this paper adds Changes in impairments in individuals with cerebral palsy (CP) over time are related to CP subtype. After 50 years, walking ability in CP may have deteriorated or improved. Intellectual disability in CP may not always be detected in early childhood assessments. Epilepsy in CP may develop after childhood or may be outgrown.
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!
Detection vision development in infants and toddlers with congenital vision disorders and profound-severe visual impairmentAlison T Salt, Michelle A O'Reilly, Elena Sakkalou, Naomi J Dale
- PMID: 32237151
- DOI: 10.1111/dmcn.14525
**Abstract
Aim:** To investigate detection vision development in infants and toddlers with congenital disorders of the peripheral visual system (CDPVS) and severe to profound visual impairment (SVI/PVI).
Method: This was a longitudinal observational investigation of a cohort of infants with CDPVS (entry age 8-16mo) followed up 12 months later. Detection vision (Near Detection Scale [NDS]) and resolution acuity (Keeler Acuity Cards [KAC]) were assessed at each time point. Relationships between detection vision, resolution acuity, and age were investigated.
Results: The study cohort comprised 80 children (39 females, 41 males), mean age 13 months (Time 1) and 26 months (Time 2); 22 (27.5%) with PVI (light perception at best) and 58 (72.5%) with SVI (basic 'form' vision) at Time 1. All children achieved a measure with the NDS, however only 35 per cent and 56 per cent at Time 1 and Time 2 respectively did so on KAC. Those with PVI at Time 1 showed no further improvement at Time 2, but 87 per cent of children with SVI showed improvement in vision. The median change in NDS score was 1.0 (range 1-7, SD 1.68).
Interpretation: Vision development continues after 12 months of age in many toddlers if they have basic 'form' vision. A measure of detection vision is feasible in very young children when resolution acuity measurement is not achievable.
What this paper adds: The Near Detection Scale (NDS) can measure low levels of vision when acuity is not otherwise measurable. Vision can improve in toddlers with severe visual impairment who have some 'form' vision. Infants with light perception at best by 12 months are unlikely to show improvement in vision. There is a moderate negative relationship between the NDS and resolution acuity results.
Congenital Cytomegalovirus (CMV) and Covid-19.
This topic of infectious diseases is a really timely one. Our job as clinicians is face to face with children - we might be at arms length away or we may also be really up close too! This not only presents as a potential spread of an infectious disease, but it is also a point of contact where families might have some questions or potentially may be sitting on some misinformation about diseases such as CMV or COVID-19.
There is so much information out there and not everything we read or are presented with represents the true state of science. When developing prevention and treatment approaches, we rely so much on science to provide the solutions because it is based on large data sets that can then be generalised to the wider population.
The power of infection control - hand hygiene, applying barriers and staying at home when sick! They are all seemingly simple but also incredibly effective. The world has changed so much now so coughing into our elbow and even wearing a face mask isn’t something that draws a second glance anymore. This is a good thing because these are important measures to have in place when we are treating children either within their home, the community or hospital setting.
It is so important to look at reliable sources of information so that we can do the right thing to keep both ourselves and our patients safe. Prevention is a key strategy and the power is literally in our hands!
Now when it comes to COVID-19, it was so timely to hear Asha’s passion about the importance of school. For the first time, our government has issued a lock down but with a clear directive to keep schools open. It is intriguing that children don’t respond the same way to COVID-19 as adults do and this has some really important implications for prevention and scientists are still trying to unpack this. Schools are the best place for children to be - to be stimulated and to be in a learning environment sets them up for success and for a better future.
Gait features of dystonia in cerebral palsyBhooma R Aravamuthan, Keisuke Ueda, Hanyang Miao, Laura Gilbert, Sarah E Smith, Toni S Pearson
Affiliations expand
- PMID: 33411352
- DOI: 10.1111/dmcn.14802
Abstract
Aim: To determine the features cited by motor phenotyping experts when identifying dystonia in people with cerebral palsy (CP).
Method: Dystonia identification in CP, particularly when comorbid with spasticity, can be difficult. The dystonia diagnostic criterion standard remains subjective visual identification by expert consensus. For this qualitative study, we conducted an inductive thematic analysis of consensus-building discussions between three pediatric movement disorder physicians as they identified the presence or absence of dystonia in gait videos of 40 participants with spastic CP and periventricular leukomalacia.
Results: Unanimous consensus about the presence or absence of dystonia was achieved for 34 out of 40 videos. Two main themes were present during consensus-building discussions as videos were evaluated for dystonia: (1) unilateral leg or foot adduction that was variable over time, and (2) difficulty in identifying dystonia. Codes contributing to the first theme were more likely to be cited by a discussant when they felt dystonia was present (as opposed to absent) in a video (χ2 test, p=0.004).
Discussion: These results describe the gait features cited by experts during consensus-building discussion as they identify dystonia in ambulatory people with CP. Qualitative thematic analysis of these discussions could help codify the subjective process of dystonia diagnosis.
Her video podcast link: https://youtu.be/ONrDuhVOFOc
**Assistive technology products: a position paper from the first global research, innovation, and education on assistive technology (GREAT) summit
Abstract**This paper is based on work from the Global Research, Innovation, and Education on Assistive Technology (GREAT) Summit that was coordinated by WHO’s Global Cooperation on Assistive Technology (GATE). The purpose of this paper is to describe the needs and opportunities embedded in the assistive product lifecycle as well as issues relating to the various stages of assistive product mobilization worldwide.
The paper discusses assistive technology product terminology and the dangers of focusing on products outside the context and rolling out products without a plan. Additionally, the paper reviews concepts and issues around technology transfer, particularly in relation to meeting global needs and among countries with limited resources. Several opportunities are highlighted including technology advancement and the world nearing a state of readiness through a developing capacity of nations across the world to successfully adopt and support the assistive technology products and applications.
The paper is optimistic about the future of assistive technology products reaching the people that can use it the most and the excitement across large and small nations in increasing their own capacities for implementing assistive technology. This is expressed as hope in future students as they innovate and in modern engineering that will enable assistive technology to pervade all corners of current and potential marketplaces. Importantly, the paper poses numerous topics where discussions are just superficially opened. The hope is that a set of sequels will follow to continue this critical dialog.
- Implications for Rehabilitation
- Successful assistive technology product interventions are complex and include much more than the simple selection of the right product.
- Assistive technology product use is highly context sensitive in terms of an individual user’s environment.
- The development of assistive technology products is tricky as it must be contextually sensitive to the development environment and market as well.
- As a field we have much to study and develop around assistive technology product interventions from a global perspective.
The effect of a running training intervention on ankle power generation in children and adolescents with cerebral palsy: A randomized controlled trial Abstract
Background: Children and adolescents with cerebral palsy who are classified as Gross Motor Function Classification Scale level I or II are usually able to run but lack ankle power generation for push-off. The aim of this study was to analyze the efficacy of a running training program in improving ankle power generation in children and adolescents with cerebral palsy.
Methods: This randomized controlled trial compared kinematic and spatiotemporal data collected during running from 38 children and adolescents with unilateral or bilateral cerebral palsy before and after a 12-week running program. Normalized speed, stride length, cadence, foot strike pattern, peak ankle power generation, peak hip flexor power generation in swing and propulsion strategy were calculated. Linear mixed models were developed to analyze differences between groups.
Findings: At follow-up the intervention group had increased normalized speed of running (t = -3.68 p < .01) while the control group got slower (t = 3.17 p < .01). In running, children in Gross Motor Function Classification Scale level II in the intervention group increased ankle power (t = 2.49 p = .01) while the control group did not change (t = 0.38 p = .71). In sprinting, children in Gross Motor Function Classification Scale levels I and II in the intervention group maintained ankle power (level I t = 0.32 p = .75; level II t = 1.56 p = .12) while those in the control group decreased ankle power (level I t = 4.69 p < .01; level II t = 2.52 p = .01). Most within-group differences did not result in significant between-group differences at follow-up.
Interpretation: Power generation for running may be responsive to targeted intervention in children with cerebral palsy.
Keywords: Cerebral palsy; Children; Kinetics; Power; Running.
A ROUNDTABLE DISCUSSION WITH RESEARCHERS AND CLINICIANS
A special Q and A - in conjunction with families and parents
This is a unique podcast as we hit pause on our usual program to answer questions that families have been sending us. On the pod this week, we have Marissa Smith (Physiotherapist), Georgia Hoffman (Physiotherapist), Loren West (Occupational Therapist) and Dr Dayna Pool (Physiotherapist).
How we actually put all the knowledge into practice is a big and important question. Even if we have all the knowledge available, unless we know how we can implement research findings and recommendations into real life settings, the knowledge isn’t particularly useful!
Parents and children have great questions because ultimately, they want to be able to make informed decisions that enable the best possible outcome. This podcast is so important as we answer the most common questions that have been sent to us. Clearly, these questions are meaningful to families and this round table discussion of experienced health professionals provides the thought processes involved in making decisions that optimise outcomes by using the best available evidence.
The key is that individualised care is at the core - each person is different, with a different set of circumstances and goals. Making decisions should always be based on the best available evidence and as you’ll hear from our conversation - there is no such thing as a one size fits all but, there are some very clear considerations in developing the best possible therapy program and recommendations for care.
If we are evidence based, we are ultimately fulfilling our ethical obligations as health professionals in optimising care and minimising harm. This was made so incredibly clear in Professor Iona Novak and Professor Andrew Whitehouse’s podcast earlier in the season. So we hope you enjoy this special episode as the panel discusses the clinical decision making process within the best available evidence for the following questions:
- When do you wear AFOs and is it ok to take them off?
- What surgeries to muscles would you expect children with cerebral palsy would need?
- I have a wheelchair and walking frame but I can’t bring them around everywhere. So sometimes the wheelchair is at home, a walker at school but he likes to crawl around at home. How do I strike the right balance?
- There are so many walkers out there. How do I choose a walker that is right for my child?
- How do I know what therapies to pick?
Comparing parent and provider priorities in discussions of early detection and intervention for infants with and at risk of cerebral palsyRachel Byrne, Andrea Duncan, Tracy Pickar, Stephanie Burkhardt, Roslyn N Boyd, Mary Lauren Neel , Nathalie L Maitre
Abstract
Background: Although literature suggests that parents need support when their child is diagnosed with cerebral palsy (CP), it is unclear to what extent providers implement these supports in practice and what parental perspectives surround provider early diagnosis and management of CP. Therefore, we aimed to characterize and compare experiences of providers and parents of children with CP with regards to early detection and intervention.
Method: Seventeen parents participated in day-long world-café style workshops focused on categories extracted from the International Classification of Function framework and recent systematic reviews of early detection for CP. Thirty regional providers (generalists, specialists, and therapists) caring for infants with CP completed surveys with scaled score and open-ended questions. Quantitative and qualitative data were independently assessed by two reviewers to identify prominent themes.
Results: All parents (100%) stated early diagnosis or high risk for CP classification was beneficial compared with only 50% of providers who often gave early CP diagnoses before 12 months. Top parent priorities were honesty and positively phrased messages. Providers most often addressed cognition, primary care need, motor, and feeding issues (80%, 62%, 54%, 54% frequently/sometimes). Matching priorities for discussion were neuroimaging timing/risk/benefit, cognition, primary care, motor, and feeding/nutrition. Discordance occurred for participation, parent well-being, pain and vision, with parents wanting more education and resources.
Conclusions: Receiving early diagnoses or high-risk for CP classification is a parent priority. Alignment between parents and providers exists for International Classification of Function domains of body functions/structures and activity, but less for those of environment, personal, and participation.
Participation predictors for leisure-time physical activity intervention in children with cerebral palsySarah E Reedman, Roslyn N Boyd, Jenny Ziviani, Catherine Elliott, Robert S Ware, Leanne Sakzewski
Abstract
Aim: To determine the predictors of magnitude of change in response to a participation-focused leisure-time physical activity intervention in children with cerebral palsy (CP) using the ParticiPAte CP protocol.
Method: We included 33 children (16 males, 17 females) aged 8 to 12 years (mean age=10y, SD=1y 6mo) with CP with pre/postintervention data from a wait-list randomized trial. The hypothesized linear predictors of change in primary outcomes (Canadian Occupational Performance Measure [COPM]-performance and COPM-satisfaction, Belief in Goal Self-Competence Scale (BiGSS), and minutes per day moderate-to-vigorous physical activity [MVPA]) were: age; Gross Motor Function Classification System level; comorbid autism spectrum disorder (ASD); Goal Attainment Scaling T score; Problems in Schools Questionnaire; Physical Activity Climate Questionnaire; Motives for Physical Activities Measure-Revised; and stage of behaviour change. Multivariable models were selected using the Bayesian information criterion.
Results: Overcoming barriers to participation, age, and comorbid ASD explained 49% of the variance in change in COPM-performance. Being motivated by interest and/or enjoyment and age explained 32% of the variance in change in COPM-satisfaction. Being motivated by physical activity competence or appearance (extrinsic motivation) explained 24% of the variance in change in BiGSS. Parental autonomy supportiveness, overcoming barriers to participation, appearance motivation, and baseline MVPA explained 59% of the variance in change in MVPA.
Interpretation: These findings support a behaviour paradigm for conceptualizing physical activity in children with CP.
What this paper adds: Children who met their treatment goals showed a greater increase in physical activity participation. Children who were more intrinsically motivated by physical activity at baseline improved more. Being older and having a comorbid diagnosis of autism spectrum disorder were associated with an attenuated effect of the therapy.
Somatosensory discrimination impairment in children with hemiplegic cerebral palsy as measured by the sense_assess© kidsBelinda McLean, Susan Taylor, Jane Valentine, Leeanne Carey, Ashleigh Thornton, Catherine Elliott
- PMID: 33738799
- DOI: 10.1111/1440-1630.12729
Abstract
Introduction: To characterise somatosensory discrimination impairment of the upper-limb across domains of tactile discrimination, limb position sense and haptic object recognition using the sense_assess© kids and examine associations with upper-limb motor performance in children with hemiplegic cerebral palsy (CP).
Methods: The sense_assess© kids was administered at one timepoint to 28 children, aged 6-15.5 years (M = 10.1, SD = 2.4), with hemiplegic CP (right hemiplegia n = 15) and Manual Ability Classification System Levels I (n = 11) and II (n = 17). Unimanual motor performance was quantified using the Box and Block Test.
Results: Tactile discrimination was impaired in 18, limb position sense in 20, and haptic object recognition was impaired in 21 of 28 children. Over 80% (23/28) of children had impaired somatosensory discrimination in one or more domains. Low to moderate correlations were observed between each measure of somatosensory discrimination and motor performance. Manual ability classification was associated with limb position sense and haptic object recognition. A moderate inverse correlation (r = -.57, p < .01) exists between the number of somatosensory domains impaired and motor performance.
Conclusion: The frequency of somatosensory impairment in the upper limb of children in our sample was high and associated with manual ability, suggesting a need for routine assessment of somatosensation in this population.
Keywords: cerebral palsy; proprioception; stereognosis; touch; touch perception; upper extremity.
Autism and attention-deficit/hyperactivity disorder in children with cerebral palsy: high prevalence rates in a population-based studyMagnus Påhlman , Christopher Gillberg , Kate Himmelmann
Abstract
Aim: To assess a total population of school-age children with cerebral palsy (CP) for autism and attention-deficit/hyperactivity disorder (ADHD) with a view to determining their prevalence and to relate findings to motor function, intellectual disability, and other associated impairments.
Method: Of 264 children, born between 1999 and 2006, from the CP register of western Sweden, 200 children (109 males, 91 females, median age at assessment 14y, range 7-18y) completed comprehensive screening and further neuropsychiatric clinical assessments.
Results: Ninety children (45%) were diagnosed with autism, ADHD, or both, 59 (30%) were diagnosed with autism, and 60 (30%) were diagnosed with ADHD. Intellectual disability was present in 51%. Two-thirds had autism, ADHD, and/or intellectual disability. In regression models, autism was mainly predicted by intellectual disability (odds ratio [OR]=4.1) and ADHD (OR=3.2), and ADHD was predicted by intellectual disability (OR=2.3) and autism (OR=3.0). Autism was more common in children born preterm (OR=2.0). Gross motor function was not associated with autism. ADHD prevalence was low in children with severe motor impairment, possibly due to diagnostic limitations.
Interpretation: Autism and ADHD were common in this population of children with CP and were mainly independent of motor severity and CP type. The strongest predictor of autism/ADHD was intellectual disability. Assessment for autism and ADHD is warranted as part of the evaluation in CP.
What this paper adds: Forty-five percent of the children with cerebral palsy also had autism, attention-deficit/hyperactivity disorder (ADHD), or both. Autism and ADHD were predicted mainly by intellectual disability. Established diagnostic instruments worked well for all but the most disabled group of children.
Prevention and management of respiratory disease in young people with cerebral palsy: consensus statementNoula Gibson, Amanda M Blackmore, Anne B Chang, Monica S Cooper, Adam Jaffe, Wee-Ren Kong, Katherine Langdon, Lisa Moshovis, Karolina Pavleski, Andrew C Wilson
Abstract
in English, Spanish, Portuguese
Respiratory illness is the leading cause of mortality in children with cerebral palsy (CP). Although risk factors for developing chronic respiratory illness have been identified, comprehensive clinical care recommendations for the prevention and management of respiratory illness do not currently exist.
We invited over 200 clinicians and researchers from multiple disciplines with expertise in the management of respiratory illness in children with CP to develop care recommendations using a modified Delphi method on the basis of the RAND Corporation-University of California Los Angeles Appropriateness Method.
These recommendations are intended for use by the wide range of practitioners who care for individuals living with CP. They provide a framework for recognizing multifactorial primary and secondary potentially modifiable risk factors and for providing coordinated multidisciplinary care.
We describe the methods used to generate the consensus recommendations, and the overall perspective on assessment, prevention, and treatment of respiratory illness in children with CP.
WHAT THIS PAPER ADDS:
The first consensus statement for preventing and managing respiratory disease in cerebral palsy (CP). Risk factors for respiratory disease in CP should be identified early. Individuals with CP at risk of respiratory disease require regular assessment of risk factors. Effective partnerships between multidisciplinary teams, individuals with CP, and families are essential. Treatment of respiratory disease in individuals with CP must be proactive.
Botulinum toxin and surgical intervention in children and adolescents with cerebral palsy: who, when and why do we treat?Jane Valentine, Sue-Anne Davidson, Natasha Bear, Eve Blair, Roslyn Ward, Ashleigh Thornton , Katherine Stannage, Linda Watson, David Forbes, Catherine Elliott
- PMID: 31415723
- DOI: 10.1080/09638288.2019.1644381
Abstract
Introduction: This audit aimed to increase understanding of the long-term outcomes of evidence-based medical and surgical interventions to improve gross motor function in children and adolescents with Cerebral Palsy.
Methods: Retrospective audit of a birth cohort (2000-2009) attending a tertiary service in Western Australia.
Results: The cohort comprises 771 patients aged 8 to 17 years. Percentage of children receiving no Botulinum Toxin treatments in each Gross Motor Functional Classification System level was: I: 40%, II: 26%, III: 33%, IV: 28% and V: 46%. Of the total cohort, 53% of children received 4 or less Botulinum Toxin treatments and 3.7% received more than 20 treatments. Statistically significant difference in the rate of use of Botulinum Toxin pre and post-surgery (p < 0.001) was documented. Children levels IV and V had 5 times the odds of surgery compared to children levels I-III (Odds Ratio 5.2, 95% Confidence Interval 3.5 to 7.8, p < 0.001). For 578 (75%) of participants the last recorded level was the same as the first.
Conclusion: This audit documents medical intervention by age and Gross Motor Functional Classification System level in a large cohort of children with cerebral palsy over time and confirms stability of the level in the majority.IMPLICATIONS FOR REHABILITATIONThe information from this audit may be of use in discussions with families regarding the timing and use of Botulinum toxin and surgical intervention for motor function in children and adolescents with Cerebral Palsy.Long term use of Botulinum Toxin within an integrated evidence-based clinical program is not associated with loss of gross motor function in the long term as evidenced by the maintenance of Gross Motor Functional Classification System stability.
Keywords: Cerebral palsy; botulinum toxin; children; gross motor function classification; orthopedic surgery.
A realist evaluation of a physical activity participation intervention for children and youth with disabilities: what works, for whom, in what circumstances, and how?C E Willis , S Reid , C Elliott , M Rosenberg , A Nyquist , R Jahnsen, S Girdler
Abstract
Background: The need to identify strategies that facilitate involvement in physical activity for children and youth with disabilities is recognised as an urgent priority. This study aimed to describe the association between context, mechanisms and outcome(s) of a participation-focused physical activity intervention to understand what works, in what conditions, and how.
Methods: This study was designed as a realist evaluation. Participant recruitment occurred through purposive and theoretical sampling of children and parents participating in the Local Environment Model intervention at Beitostolen Healthsports Centre in Norway. Ethnographic methods comprising participant observation, interviews, and focus groups were employed over 15 weeks in the field. Data analysis was completed using the context-mechanism-outcome framework of realist evaluation. Context-mechanism-outcome connections were generated empirically from the data to create a model to indicate how the program activated mechanisms within the program context, to enable participation in physical activity.
Results: Thirty one children with a range of disabilities (mean age 12y 6 m (SD 2y 2 m); 18 males) and their parents (n = 44; 26 mothers and 18 fathers) participated in the study. Following data synthesis, a refined program theory comprising four context themes, five mechanisms, and six outcomes, were identified. The mechanisms (choice, fun, friends, specialised health professionals, and time) were activated in a context that was safe, social, learning-based and family-centred, to elicit outcomes across all levels of the International Classification of Functioning, Disability and Health.
Conclusions: The interaction of mechanisms and context as a whole facilitated meaningful outcomes for children and youth with disabilities, and their parents. Whilst optimising participation in physical activity is a primary outcome of the Local Environment Model, the refined program theory suggests the participation-focused approach may act as a catalyst to promote a range of outcomes. Findings from this study may inform future interventions attempting to enable participation in physical activity for children and youth with disabilities.
Keywords: Adolescent; Child; Context; Intellectual disability; Mechanism; Outcome; Parent; Participation; Physical activity; Physical disability.
Measuring skeletal muscle morphology and architecture with imaging modalities in children with cerebral palsy: a scoping reviewSîan A Williams 1 2, N Susan Stott 2 3, Jane Valentine 4 5, Catherine Elliott 4 6, Siobhán L Reid 7
Abstract
Aim: To investigate the use of ultrasound and magnetic resonance imaging (MRI) methodologies to assess muscle morphology and architecture in children with cerebral palsy (CP).
Method: A scoping review was conducted with systematic searches of Medline, Embase, Scopus, Web of Science, PubMed, and PsycInfo for all original articles published up to January 2019 utilizing ultrasound and/or MRI to determine morphological and architectural properties of lower limb skeletal muscle in children with CP.
Results: Eighty papers used ultrasound (n=44), three-dimensional ultrasound (n=16), or MRI (n=20) to measure at least one muscle parameter in children and adolescents with CP. Most research investigated single muscles, predominantly the medial gastrocnemius muscle, included children classified in Gross Motor Function Classification System levels I (n=62) and II (n=65), and assessed fascicle length (n=35) and/or muscle volume (n=35). Only 21 papers reported reliability of imaging techniques. Forty-six papers assessed measures of Impairment (n=39), Activity (n=24), and Participation (n=3).
Interpretation: Current research study design, variation in methodology, and preferences towards investigation of isolated muscles may oversimplify the complexities of CP muscle but provide a foundation for the understanding of the changes in muscle parameters in children with CP.
What this paper adds: Current evidence is biased towards the medial gastrocnemius muscle and more functionally able children with cerebral palsy (CP). Variations in imaging techniques and joint positioning limit comparisons between studies. Clinimetric testing of parameters of CP muscle is not always considered. Assessment of parameter(s) of muscle with measures of participation is sparse.
24‐hour activity for children with cerebral palsy: a clinical practice guideOlaf Verschuren Raquel Y Hulst Jeanine Voorman Sigrid Pillen Nicole Luitwieler Jeroen Dudink Jan Willem Gorter
The association between physical activity and health has been clearly established, and the promotion of physical activity should be viewed as a cost‐effective approach that is universally prescribed as a first‐line treatment for nearly every chronic disease.
Health care providers involved in the care for individuals with cerebral palsy (CP) are encouraged to take an active role in promoting their health and well‐being. Balancing activity behaviours across the whole day, with improved physical activity, reduced sedentary time, and healthy sleep behaviours, can set up infants, preschool‐, and school‐aged children with CP for a healthy trajectory across their lifetime.
However, most clinicians do not apply a systematic surveillance, assessment, and management approach to detect problems with physical activity or sleep in children with CP. Consequently, many children with CP miss out on an important first line of treatment.
This article presents an evidence‐informed clinical practice guide with practical pointers to help practitioners in detecting 24‐hour activity problems as a critical step towards adoption of healthy lifestyle behaviours for children with CP that provide long‐term health benefits.
Interventions for children on the autism spectrum: A synthesis of research evidence.
There are many interventions available for children on the autism spectrum. Learning about and navigating these interventions can be challenging for families, clinical practitioners, and educators. Autism CRC has completed a report, entitled Interventions for children on the autism spectrum: A synthesis of research evidence. The report includes two reviews:
• narrative review, to provide an overview of
interventions for children on the autism spectrum
and their use in Australia
• umbrella review, to understand and summarise
the evidence base for interventions for children
on the autism spectrum.
The review was commissioned by the National Disability Insurance Agency and completed by Autism CRC through the work of a team that included researchers with a diverse range of professional backgrounds.
This community summary provides a brief overview of the narrative review, which explored the interventions for children on the autism spectrum and their use in Australia. A separate summary provides a brief overview of the umbrella review, which outlines the evidence base for interventions. You can find the full report, and the summary of the umbrella review, at autismcrc.com.au/interventions-evidence
Abstract
Purpose of review: Cerebral palsy is the most common physical disability of childhood, but the rate is falling, and severity is lessening. We conducted a systematic overview of best available evidence (2012-2019), appraising evidence using GRADE and the Evidence Alert Traffic Light System and then aggregated the new findings with our previous 2013 findings. This article summarises the best available evidence interventions for preventing and managing cerebral palsy in 2019.
Recent findings: Effective prevention strategies include antenatal corticosteroids, magnesium sulfate, caffeine, and neonatal hypothermia. Effective allied health interventions include acceptance and commitment therapy, action observations, bimanual training, casting, constraint-induced movement therapy, environmental enrichment, fitness training, goal-directed training, hippotherapy, home programs, literacy interventions, mobility training, oral sensorimotor, oral sensorimotor plus electrical stimulation, pressure care, stepping stones triple P, strength training, task-specific training, treadmill training, partial body weight support treadmill training, and weight-bearing. Effective medical and surgical interventions include anti-convulsants, bisphosphonates, botulinum toxin, botulinum toxin plus occupational therapy, botulinum toxin plus casting, diazepam, dentistry, hip surveillance, intrathecal baclofen, scoliosis correction, selective dorsal rhizotomy, and umbilical cord blood cell therapy. We have provided guidance about what works and what does not to inform decision-making, and highlighted areas for more research.
Keywords: Cerebral palsy; Evidence based; GRADE; Systematic review; Traffic light system.
Welcome back - it's our second episode!
Patterns and reliability of children's skin temperature prior to and during sleep in the home settingSusan M McCabe, Catherine Elliott, Katherine Langdon, Chris R Abbiss
- PMID: 29885918
- DOI: 10.1016/j.physbeh.2018.06.005
Abstract
The relationship between patterns of change in skin temperature and sleep is well recognised. In particular, there is a rapid rise in distal skin temperature (Tdistal) and slower rise in proximal skin temperature (Tproximal) prior to sleep onset. The difference between Tdistal and Tproximal is known as the distal-proximal gradient (DPG).
Rise in DPG is known as a measure of distal vasodilation, which contributes to the drop in core body temperature (Tcore) that is important to sleep onset and maintenance. Patterns of change in skin temperature before and during sleep are reported for neonates, infants, adults and elderly, however they are not known for school aged children. Therefore, the current observational study aimed to determine the patterns and reliability of skin temperatures (Tskin) and DPG in relation to sleep of school aged children in their home settings.
Participants (22 children, aged 6-12) completed the Children's Sleep Habits Questionnaire and used Thermochron iButtons and actigraphy for four school nights in their typical sleep settings. There were evident patterns of Tskin change before and during sleep. In particular, Tdistal was lower but rose more rapidly than Tproximal after reported bedtime and prior to sleep onset. This reflected a timely rise in DPG, and shows that distal vasodilation precedes sleep onset in school aged children.
The measures of Tskin and sleep were practical for children in their home settings, and the observed patterns were consistent across consecutive school nights. Environmental and behavioural strategies that manage skin temperature before and during sleep should be explored for their potential as valuable components of treatment of childhood insomnia.
Keywords: Distal and proximal skin temperatures; Natural environments; School-age children; Sleep onset.
The Pilot episode!
Locomotor and robotic assistive gait training for children with cerebral palsy Dayna Pool, Jane Valentine, Nicholas F Taylor, Natasha Bear, Catherine Elliott
https://pubmed.ncbi.nlm.nih.gov/33225442/
Abstract
Aim: To determine if robotic assisted gait training (RAGT) using surface muscle electrical stimulation and locomotor training enhances mobility outcomes when compared to locomotor training alone in children with cerebral palsy (CP).
Method: Forty children (18 females, 22 males; mean age 8y 1mo, SD 2y 1mo; range 5y 1mo-12y 11mo) with CP in Gross Motor Function Classification System levels (GMFCS) III, IV, and V were randomly assigned to the RAGT and locomotor training (RAGT+LT) group or locomotor training only group (dosage for both: three 1-hour sessions a week for 6 weeks). Outcomes were assessed at baseline T1 (week 0), post-treatment T2 (week 6), and retention T3 (week 26). The primary outcome measure was the Goal Attainment Scale. Secondary outcome measures included the 10-metre walk test, children's functional independence measure mobility and self-care domain, the Canadian Occupational Performance Measure, and the Gross Motor Function Measure.
Results: There were no significant differences between the groups for both the primary and secondary outcome measures. All participants completed the intervention in their original group allocation. There were no reported adverse events.
Interpretation: The addition of RAGT to locomotor training does not significantly improve motor outcomes in children with CP in GMFCS levels III, IV, and V. Future studies could investigate health and well-being outcomes after locomotor training.
What this paper adds: Marginally ambulant and non-ambulant children with cerebral palsy can participate in locomotor training. Robotic assisted gait training when added to locomotor training does not appear to be any more effective than locomotor training alone.
https://pubmed.ncbi.nlm.nih.gov/33225442/