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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. 

Epub 2022 Aug 4. PMID: 35943383.

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.