Research in Action

Conducting research studies requires a comprehensive understanding of the current evidence as well as the methods needed to perform a study that has as little bias as possible. The reason for this is that we want to ensure that the results are the true results and not the product of other influences such as environmental factors, personal biases and predetermined outcomes. 

The aim of research studies are to build knowledge so that we can provide a way for other people within the health industry to replicate the intervention and obtain the same results with their patients.

Take for example medications such as antibiotics or cancer drugs used for chemotherapy. It is important to know what the active ingredients are to make the drugs work, how much of it to give over a period of time and also what the side effects might be so that the potential benefit versus the potential harm can be weighed up. 

It is really obvious here that we want to know what the true results are - not results that have been influenced by bias or external factors. With this knowledge, medical professionals can have the confidence to prescribe both the most effective and safe treatment for their patients. 

Where the research is published is also an important aspect of conducting studies. With the accessibility of online blogs and websites that are available on the internet, it can be so challenging to distinguish between what research is credible and what research isn’t. 

The best way to tell the difference is to see if the research study is published in a reputable journal. Reputable journals ensure they only publish research that has been peer reviewed so that only research without outstanding flaws or biases are published. This process certainly isn’t perfect and has its own challenges but it is the best we have at the moment.

Each and everyone of our programs are based on published research. Below are the most recently published articles that form the foundation of our programs. Not only do we carry out the intervention using all the active ingredients of what we know works best to improve outcomes, but we also measure the outcomes in the same way that the studies do. 

This is the best way of evaluating whether the intervention is achieving what we hope it would. It is also very important to keep in mind that each child is different with their own goals, dreams, hopes, likes and dislikes. With this in mind, we shape the intervention to each child so that it is fun, motivating and enjoyable because we know that this is the best way to learn new skills.

The final thing to say about research is that it is not static! 

This is the best part! it is always changing, developing and fine tuning - as it should be. It never stands still. There are researchers and clinicians all over the world that are continually discovering, testing and implementing new ideas with the combined aim of improving the lives for our children. 

Keeping up with the research is part of our job and here at Healthy Strides - we are both clinicians and researchers so this is our core value. We are continually looking at the research as well as networking with researchers both through our podcast platform, conferences and collaborative research projects. 

As the research changes - we change. We are never personally invested in a particular technique or named therapy and we have no financial interests in a particular therapeutic approach. We are invested into getting the best outcomes and research is the best way of knowing what we can do, how to do it and what outcomes we are going to achieve safely, without detrimental effects on the child’s health and well-being. 

We have left the old understandings of neuroplasticity behind - thoughts that originated in the 1970s have well and truly been replaced by new knowledge about how the brain works and learns new skills. This is the reason why we do not provide Neurodevelopmental Therapy (NDT) or Bobath, Vojta and other Manual Facilitation Techniques such as Dynamic Movement Intervention (DMI) which is based on the original 1970’s version known as Cuevas Medek Exercises (CME). 

These techniques are based on understandings of neuroplasticity that have long been surpassed by new and current knowledge and for this reason are not considered evidence based interventions. This is not a personal decision but it is however, a professional decision as clinicians and researchers.

We developed the Kindy Moves program to address a known gap in our knowledge which was - how can we support children that have equipment and physical assistance needs to be best prepared to attend school? We were very interested in how we could create an environment where multiple goals could be addressed within an interdisciplinary approach - an approach where you can’t tell who the physiotherapist, occupational therapist, speech pathologist or therapy assistant is. 

It is less about our professional identity and more about how children learn to move, use their hands and communicate with their peers. To develop the program, we worked with families who needed this kind of program and drew from our previous work in locomotor training as well as the most recently published clinical guidelines on active ingredients for effective interventions.  We have published both our protocol paper and one of the first outcome papers in an open access journal which means anyone can access and read it.

Kindy Moves: a protocol for establishing the feasibility of an activity-based intervention on goal attainment and motor capacity delivered within an interdisciplinary framework for preschool aged children with cerebral palsy

Dayna Pool, Catherine Elliott; Healthy Strides Research Advisory Council

Abstract

Introduction: Preschool aged children with cerebral palsy (CP) and like conditions are at risk of performing below their peers in key skill areas of school readiness. Kindy Moves was developed to support school readiness in preschool aged children with CP and like conditions that are dependent on physical assistance and equipment throughout the day. The primary aims are to determine the feasibility of motor-based interventions that are functional and goal directed, adequately dosed and embedded into a play environment with interdisciplinary support to optimise goal-driven outcomes.

Methods and analysis: Forty children with CP and like conditions aged between 2 and 5 years with a Gross Motor Function Classification System (GMFCS) level of III-V or equivalent, that is, dependent on physical assistance and equipment will be recruited in Western Australia. Participants will undertake a 4-week programme, comprised three, 2-hour sessions a week consisting of floor time, gross motor movement and play (30 min), locomotor treadmill training (30 min), overground walking in gait trainers (30 min) and table-top activities (30 min). 

The programme is group based with 3-4 children of similar GMFCS levels in each group. However, each child will be supported by their own therapist providing an interdisciplinary and goal directed approach. Primary outcomes of this feasibility study will be goal attainment (Goal Attainment Scale) and secondary outcomes will include Canadian Occupational Performance Measure, 10 metre walk test, Children's Functional Independence Measure, Sleep Disturbance Scale, Infant and Toddler Quality of Life Questionnaire, Peabody Developmental Motor Scale and Gross Motor Function Measure. Outcomes will be assessed at baseline, post intervention (4 weeks) and retention at the 4-week follow-up.

Ethics and dissemination: Ethical approval was obtained from Curtin University Human Ethics Committee (HRE2019-0073). Results will be disseminated through published manuscripts in peer-reviewed journals, conference presentations and public seminars for stakeholder groups.

Trial registration number: Australian New Zealand Clinical Trials Registry (ACTRN12619000064101p).

Citation: Pool D, Elliott C; Healthy Strides Research Advisory Council. Kindy Moves: a protocol for establishing the feasibility of an activity-based intervention on goal attainment and motor capacity delivered within an interdisciplinary framework for preschool aged children with cerebral palsy. BMJ Open. 2021 Aug 13;11(8):e046831. doi: 10.1136/bmjopen-2020-046831. PMID: 34389566; PMCID: PMC8365782.

Access to article: DOI: 10.1136/bmjopen-2020-046831

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 assistance

Matthew 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 pre-intervention (T1) to post-intervention (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.

Citation: Haddon M, West L, Elliott C, Walmsley C, Valentine J, Bear N, Pool D; Healthy Strides Research Advisory Council. 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 assistance. BMJ Open. 2023 May 11;13(5):e068816. doi: 10.1136/bmjopen-2022-068816. PMID: 37169503; PMCID: PMC10186443.

Access to article:  DOI: 10.1136/bmjopen-2022-068816

Our STRIDE program is often referred to as our flagship program because it is based on the original iStride study. 

The iStride study was Dr Pool’s first post doctoral research study that was conducted between 2015 and 2017 at Princess Margaret Hospital (now Perth Children’s Hospital). The idea behind this study was once again a need from families and children with cerebral palsy that either wanted to be able to learn to walk with a walking frame or to keep walking as they got older. 

The results of the study were so compelling that it led to the Healthy Strides Foundation! The results from the research study have been replicated time and time again. This is the beauty of research - if you follow the protocol, ensure all the active ingredients are there and do it for the optimal dosage i.e., number of days a week and number of weeks in total - we see the same results time and time again. 

Even though there is an established protocol, the STRIDE program is still very individualised as it is based on each child’s goals that are meaningful to them. We have published both the outcomes of the program from a motor outcome perspective (such as walking speed and gross motor skills) as well as the perspective from families, children and therapists involved in the training (known as a qualitative paper) in reputable and open access journals. Combined, we have a wonderful perspective about what this intervention means and what it can do.

Locomotor and robotic assistive gait training for children with cerebral palsy

Dayna Pool, Jane Valentine, Nicholas F Taylor, Natasha Bear, Catherine Elliott 

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.

Citation: Pool D, Valentine J, Taylor NF, Bear N, Elliott C. Locomotor and robotic assistive gait training for children with cerebral palsy. Dev Med Child Neurol. 2021 Mar;63(3):328-335. doi: 10.1111/dmcn.14746. Epub 2020 Nov 22. PMID: 33225442.

Access to the article  DOI: 10.1111/dmcn.14746

The Experience of Locomotor Training From the Perspectives of Therapists and Parents of Children With Cerebral Palsy

Dayna Pool, Catherine Elliott, Claire Willis and Ashleigh Thornton

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 paediatric 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.

Citation: Pool D, Elliott C, Willis C, Thornton A. The Experience of Locomotor Training From the Perspectives of Therapists and Parents of Children With Cerebral Palsy. Front Rehabil Sci. 2021 Dec 2;2:740426. doi: 10.3389/fresc.2021.740426. PMID: 36188854; PMCID: PMC9397752

Access to the article: doi: 10.3389/fresc.2021.740426

In an effort to discover any new potential in the STRIDE program, we have combined it with a cycling protocol that was developed by researchers from the University of Queensland. Working together with a large research team in Queensland - the Queensland Cerebral Palsy and Rehabilitation Research Centre (for more information: https://qcprrc.centre.uq.edu.au/) we are aiming to test if the combination of these already established interventions can further improve outcomes. 

This is an active study that is occurring right now (with Healthy Strides being the West Australian site) with the protocol published in an open access reputable journal. Dr Pool is the lead post doctoral researcher for this study and is responsible for ensuring all sites around Australia are able to provide the intervention. 

If you are interested in being part of this research, please head to our Active Strides CP information page - click on the link just below this article.

ACTIVE STRIDES-CP: protocol for a randomised trial of intensive rehabilitation (combined intensive gait and cycling training) for children with moderate-to-severe bilateral cerebral palsy

Leanne Sakzewski,, Dayna Pool,, Ellen Armstrong,, Sarah Elizabeth Reedman,, Roslyn N Boyd,, Catherine Elliott, Iona Novak, Stewart Trost, Robert S Ware, Tracy Comans, Rachel Toovey, Mark D Peterson, Megan Kentish, Sean Horan,, Jane Valentine, Sian Williams

Abstract

Introduction: For children with cerebral palsy (CP), who are marginally ambulant, gross motor capacity peaks between 6 and 7 years of age with a subsequent clinical decline, impacting their ability to engage in physical activity. Active Strides-CP is a novel package of physiotherapy targeting body functions, activity and participation outcomes for children with bilateral CP. This study will compare Active Strides-CP to usual care in a multisite randomised waitlist-controlled trial.

Methods and analysis: 150 children with bilateral CP (5-15 years), classified in Gross Motor Function Classification System (GMFCS) levels III and IV will be stratified (GMFCS III vs IV, age 5-10 years; 11-15 years and trial site) and randomised to receive either (1) 8 weeks of Active Strides-CP two times/week for 1.5 hours in clinic and one time/week for 1 hour alternating home visits and telehealth (total dose=32 hours) or (2) usual care. Active Strides-CP comprises functional electrical stimulation cycling, partial body weight support treadmill training, overground walking, adapted community cycling and goal-directed training. Outcomes will be measured at baseline, immediately post-intervention at 9 weeks primary endpoint and at 26 weeks post-baseline for retention. The primary outcome is the Gross Motor Function Measure-66. Secondary outcomes include habitual physical activity, cardiorespiratory fitness, walking speed and distance, frequency/involvement of community participation, mobility, goal attainment and quality of life. Analyses will follow standard principles for randomised controlled trials using two-group comparisons on all participants on an intention-to-treat basis. Comparisons between groups for primary and secondary outcomes will be conducted using regression models. A within-trial cost utility analysis will be performed.

Ethics and dissemination: The Children's Health Queensland Hospital and Health Service, The University of Queensland, The University of Melbourne and Curtin University Human Research Ethics Committees have approved this study. Results will be disseminated as conference abstracts and presentations, peer-reviewed articles in scientific journals, and institution newsletters and media releases.

Trial registration number: ACTRN12621001133820.

Citation: Sakzewski L, Pool D, Armstrong E, Reedman SE, Boyd RN, Elliott C, Novak I, Trost S, Ware RS, Comans T, Toovey R, Peterson MD, Kentish M, Horan S, Valentine J, Williams S. ACTIVE STRIDES-CP: protocol for a randomised trial of intensive rehabilitation (combined intensive gait and cycling training) for children with moderate-to-severe bilateral cerebral palsy. BMJ Open. 2023 Mar 29;13(3):e068774. doi: 10.1136/bmjopen-2022-068774. PMID: 36990490; PMCID: PMC10069600.

Access to article  DOI: 10.1136/bmjopen-2022-068774

The ACTIVATE and REACH programs represent our task specific training programs which are based on the most modern and well established understandings of neuroplasticity and motor learning. 

The ACTIVATE program focuses on the development of any motor based skill that is important for the child. This can include learning how to walk in crowded areas, how to run, crawl, roll, sit, climb or transfer from a wheelchair to a chair. We use sophisticated equipment that enable children to be as active as possible so that they are generating their own movements. This is an important aspect of learning new skills - that it is a “hands-off” approach as much as possible. 

Take for example learning how to play soccer or football. Coaches can’t pick up the leg, position it in a certain way so that the player can kick! It is up to the football player to do all of that - it takes practice and fine tuning which they need to learn to do themselves. There are no shortcuts. The coach’s job is to give instruction, feedback, and set up scenarios to get the best outcome possible. This is the only way that the football player can have the skills they need to play the game. 

Therapists in ACTIVATE act more like coaches - we set up the child for a win each and every time by getting them to practice initiating and thinking through what they need to do to achieve the goal. This is how long lasting gains are kept.

The REACH program focuses on hand skills and can include typing, writing, accessing switching, brushing their teeth or brushing their hair. Within the REACH program, we use the latest in robotic equipment to help children to achieve their goals whilst making it fun and enjoyable. Once again, it is all about getting the right amount of repetitions with the child doing all of the movements themselves. 

A good example here is learning to play the piano! A person can’t learn how to play if the teacher presses the keys and fingers down for the student. Learning how to coordinate, plan and execute playing the piano is up to the student. The teacher can give instruction, demonstrate and set up exercises and scenarios so that the student has the best opportunity to practice and learn how to play the piano.

Both the ACTIVATE and REACH programs are based on the latest clinical guidelines. The clinical guidelines are based on all of the latest high quality research in paediatrics where researchers combine published results together so they can look at what the common threads are and from there identify the active ingredients of what works best to achieve outcomes. The most influential pieces of work at the moment are listed below.

Interventions to improve physical function for children and young people with cerebral palsy: international clinical practice guideline

Michelle Jackman, Leanne Sakzewski, Catherine Morgan,, Roslyn N Boyd, Sue E Brennan, Katherine Langdon, Rachel A M Toovey, Susan Greaves, Megan Thorley, Iona Novak

Abstract

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.

Citation: Jackman M, Sakzewski L, Morgan C, Boyd RN, Brennan SE, Langdon K, Toovey RAM, Greaves S, Thorley M, Novak I. Interventions to improve physical function for children and young people with cerebral palsy: international clinical practice guideline. Dev Med Child Neurol. 2022 May;64(5):536-549. doi: 10.1111/dmcn.15055. Epub 2021 Sep 21. PMID: 34549424.

Access to article: DOI: 10.1111/dmcn.15055

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

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.

Citation: Morgan C, Fetters L, Adde L, Badawi N, Bancale A, Boyd RN, Chorna O, Cioni G, Damiano DL, Darrah J, de Vries LS, Dusing S, Einspieler C, Eliasson AC, Ferriero D, Fehlings D, Forssberg H, Gordon AM, Greaves S, Guzzetta A, Hadders-Algra M, Harbourne R, Karlsson P, Krumlinde-Sundholm L, Latal B, Loughran-Fowlds A, Mak C, Maitre N, McIntyre S, Mei C, Morgan A, Kakooza-Mwesige A, Romeo DM, Sanchez K, Spittle A, Shepherd R, Thornton M, Valentine J, Ward R, Whittingham K, Zamany A, Novak I. 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. JAMA Pediatr. 2021 Aug 1;175(8):846-858. doi: 10.1001/jamapediatrics.2021.0878. PMID: 33999106; PMCID: PMC9677545.

Access to article: DOI: 10.1001/jamapediatrics.2021.0878

State of the Evidence Traffic Lights 2019: Systematic Review of Interventions for Preventing and Treating Children with Cerebral Palsy

Iona Novak, Catherine Morgan, Michael Fahey, Megan Finch-Edmondson, Claire Galea,  Ashleigh Hines, Katherine Langdon, Maria Mc Namara , Madison Cb Paton, Himanshu Popat, Benjamin Shore, Amanda Khamis, Emma Stanton,, Olivia P Finemore,, Alice Tricks, Anna Te Velde, Leigha Dark, Natalie Morton, Nadia Badawi

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 summarizes 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.

Citation: Novak I, Morgan C, Fahey M, Finch-Edmondson M, Galea C, Hines A, Langdon K, Namara MM, Paton MC, Popat H, Shore B, Khamis A, Stanton E, Finemore OP, Tricks A, Te Velde A, Dark L, Morton N, Badawi N. State of the Evidence Traffic Lights 2019: Systematic Review of Interventions for Preventing and Treating Children with Cerebral Palsy. Curr Neurol Neurosci Rep. 2020 Feb 21;20(2):3. doi: 10.1007/s11910-020-1022-z. PMID: 32086598; PMCID: PMC7035308.

Access to article: DOI: 10.1007/s11910-020-1022-z

Early Intervention Therapy

What is Early Intervention exactly?  

For most of us, we think about starting therapy early which is true and important - the research is very strong about this. But what are we doing in therapy? What does this actually mean?

Firstly, let’s set the scene. 

We know that early childhood is the most important developmental phase throughout the lifespan with investments in early intervention yielding the greatest economic rate of return when compared to investments later in childhood. We also now know that our social, emotional and cognitive development is intimately connected with our mobility. When children learn to move, whether it is rolling, crawling or walking, it is the child’s mobility that is the gateway to new opportunities to stimulate their curiosity and discover the world. Movement is needed to learn and in turn, children learn when they move. Without these early opportunities to move, development is hampered, significantly impacting across the lifespan. Therefore, mobility is central to the entire discussion.

What is done right now? 

For children with physical disabilities attributable to a neurodevelopmental disorder, their ability to learn is limited by their mobility restrictions. These restrictions are noted as early as 3 months when parents first notice that their child is not moving the way they should. By 7 months, these children continue to fall behind and fail to stand, take weight through their legs and move on their feet like their age matched peers. This deviation strongly influences a child’s emotional, cognitive and communicative skills. Without a means to move with independence, the gap between them and their peers only continues. 

Did you know that toddlers typically accumulate 14,000 steps, experience 100 falls in just 6 hours within their natural home environment? That is a lot of self-direct, individually initiated movement that facilitates so much of their development!  

Traditionally, therapies to address developmental delays are based on facilitating children through the normal milestones. In other words, it is going through the motor milestones step by step - first you roll, when you can roll, you can move onto the next step which might be sitting, then crawling, then 2 point kneeling and only then, when these are achieved that standing and walking is considered. 

This approach has now been challenged because of the latest research that provides us with the modern understandings of neuroplasticity as well as the modern understanding that mobility is a human right.

What is the current evidence?

Early intervention strategies emphasise the importance of context specific interventions that are guided by principles of motor learning and neuroplasticity.  However, facilitating mobility, in particular upright mobility (walking) has been introduced far too late – sometimes 2, 3 or as late as 5 years of age. It is crucial that early intervention truly emphasises early opportunities to move by harnessing assistive technology such as walking frames and robotic technology that is now available at Healthy Strides in Western Australia. We know that children with physical disabilities can move and walk in a walking frame independently even if they can’t roll or crawl independently. Assistive technology is now readily available in Australia and as such, we should be using these means to bridge the gap and allow children to move and explore, even if they can’t roll or crawl. 

If we are to truly intervene early and knowing that mobility is central to the discussion, then we shouldn’t be waiting for children to progress through their motor milestones because of what is often an unchangeable and life-long brain injury or neurodevelopmental disorder. As such, we shouldn’t be expecting children with neurodevelopmental disorders that cause physical impairments to progress through the normal milestones in the same way. 

What we should be doing is changing, adapting and influencing the context and environment to provide the crucial opportunities for these young children to grow, develop and ultimately, be the best version of themselves. The reason why mobility is recognised as a human right is because of the profound influence mobility has on a person’s quality of life. For toddlers, during crucial periods of development, mobility is the gateway for emotional, social and cognitive development and as such, has lifelong ramifications. For children with a physical disability, we need to intervene early to promote mobility and limit the substantial gap that would inevitably occur between children with physical disabilities and other children the same age. 

We shouldn’t be afraid of having different ways to move. A commonly reported fear is that if we walk in a walking frame, the child won’t be able to crawl. There is no evidence to say that crawling is necessary for walking but they also shouldn’t be exclusive - it’s not one or the other! We see children with physical impairments everyday that can move and walk in a walking frame by themselves at home and at school and do so with great joy and autonomy even though they can’t crawl independently. 

If we were to wait for them to crawl before we got them up in a walking frame to walk, can you imagine all the missed opportunities? We don’t expect this for ourselves -  in fact, we all have a variety of means of moving - we can choose to walk, run, drive a car or ride a bike -  choosing one way to move to get to where we need doesn't negatively affect our other options. 

Early Intervention Therapy is Healthy Strides’ dedicated program that has been designed to harness all of the modern understandings of neuroplasticity whilst also upholding the fact that mobility is a human right. As such, we implement the ON Time Mobility framework which brings together the interrelated principles of early timing, urgency, multi-modal opportunities, high frequency and sociability so 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 means that we will facilitate opportunities for infants and toddlers to move ON time so that they can be active and as independently as possible, explore their physical and social surroundings. With opportunity, frequency and success, infants and toddlers will have a variety of autonomous reciprocal physical interactions that will provide the gateway to rich learning experiences, communicative, cognitive and emotional development and socialisation. 

Citations

Sabet A, Feldner H, Tucker J, Logan SW, Galloway JC. 

ON Time Mobility: Advocating for Mobility Equity.

Pediatr Phys Ther. 2022 Oct 1;34(4):546-550. 

doi: 10.1097/PEP.0000000000000939. 

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Novak I, Morgan C, Adde L, Blackman J, Boyd RN, Brunstrom-Hernandez J, Cioni G, Damiano D, Darrah J, Eliasson AC, de Vries LS, Einspieler C, Fahey M, Fehlings D, Ferriero DM, Fetters L, Fiori S, Forssberg H, Gordon AM, Greaves S, Guzzetta A, Hadders-Algra M, Harbourne R, Kakooza-Mwesige A, Karlsson P, Krumlinde-Sundholm L, Latal B, Loughran-Fowlds A, Maitre N, McIntyre S, Noritz G, Pennington L, Romeo DM, Shepherd R, Spittle AJ, Thornton M, Valentine J, Walker K, White R, Badawi N. 

Early, Accurate Diagnosis and Early Intervention in Cerebral Palsy: Advances in Diagnosis and Treatment. 

JAMA Pediatr. 2017 Sep 1;171(9):897-907. 

doi: 10.1001/jamapediatrics.2017.1689. 

Erratum in: JAMA Pediatr. 2017 Sep 1;171(9):919. PMID: 28715518; PMCID: PMC9641643.