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

Dayna 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.

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.

Multiple doses of umbilical cord blood cells improve long-term brain injury in the neonatal rat

Tayla 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.

Peer mentor training: Pathway to competency for facilitators of Healthy Mothers Healthy Families workshops

Helen 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.

SPORTS STARS: a practitioner-led, peer-group sports intervention for ambulant children with cerebral palsy. Activity and participation outcomes of a randomised controlled trial

Georgina 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.

The Neurological Hand Deformity Classification: Construct validity, test-retest, and inter-rater reliability

Simon 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.

Reframe the Behaviour: Evaluation of a training intervention to increase capacity in managing detained youth with fetal alcohol spectrum disorder and neurodevelopmental impairments

Hayley 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.

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 disability

Laura 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.

Measurement of Upper Limb Range of Motion Using Wearable Sensors: A Systematic Review

Corrin 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 ).

Psychological morbidity among adults with cerebral palsy and spina bifida

Mark 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.

Development of the Gross Motor Function Family Report (GMF-FR) for Children with Cerebral Palsy

Paula 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.

Neurodevelopmental Therapy for Cerebral Palsy: A Meta-analysis

Anna 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.

Effect of targeted movement interventions on pain and quality of life in children with dyskinetic cerebral palsy: a pilot single subject research design to test feasibility of parent-reported assessments

Nadine 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 rehabilitation: The 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.

A qualitative analysis of the experiences of children with cerebral palsy and their caregivers in a goal-directed cycling programme

Ellen 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.

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 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!

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 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!

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.

Moving together is better: a systematic review with meta-analysis of sports-focused interventions aiming to improve physical activity participation in children and adolescents with cerebral palsy

Ricardo 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.

CDKL5 deficiency disorder: clinical features, diagnosis, and management

Helen 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.

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.

The prevalence of and potential risk factors for Developmental Language Disorder at 10 years in the Raine Study

Samuel 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.

Evidence-informed clinical perspectives on postural management for hip health in children and adults with non-ambulant cerebral palsy

Ginny 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.

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.

Word learning and verbal working memory in children with developmental language disorder

Emily 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.

Participation, both a means and an end: a conceptual analysis of processes and outcomes in childhood disability

Christine Imms, Mats Granlund, Peter H Wilson, Bert Steenbergen, Peter L Rosenbaum, Andrew M Gordon

• PMID: 27640996
• DOI: 10.1111/dmcn.13237

Free article

Abstract

This 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.

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. 

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/

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

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.

Watch the video-cast at the ResearchWorks Podcast YouTube Channel!
https://www.youtube.com/@researchworkspodcast

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

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.

1. Identification
2. Diagnosis
3. Treatment & Support
4. Non-Pharmacological Interventions
5. Pharmacological Interventions
6. Considerations – Subgroups
7. Considerations – Service & Policy
8. 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/

Parenting a Child with a Neurodevelopmental Disorder

Peter 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.

Watch the video-cast at the ResearchWorks Podcast YouTube Channel!
https://www.youtube.com/watch?v=fNMsXKfCHkc

Global prevalence of cerebral palsy: A systematic analysis

Sarah 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.

Watch the video-cast at the ResearchWorks Podcast YouTube Channel!
https://youtu.be/hO7VkbrVZoE

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:

1. 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.

2. 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.

3. ‘More’ does not necessarily mean ‘better’.

Research evidence does not indicate that more therapy leads to better outcomes for all children.

4. 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

Watch the video-cast at the ResearchWorks Podcast YouTube Channel!
https://www.youtube.com/watch?v=S0dzGX1k3bs

Implementation of an Early Communication Intervention for Young Children with Cerebral Palsy Using Single-Subject Research Design

Roslyn 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.

'Finding what works for me' - a qualitative study of factors influencing community gym participation for young adults with cerebral palsy

Georgia McKenzie, Nora Shields , Claire Willis

Affiliations expand

• PMID: 35694973
• DOI: 10.1080/09638288.2022.2083243

Abstract

Purpose: To understand the factors influencing participation in community-based gym exercise for young adults with cerebral palsy (CP).

Methods: A qualitative study using semi-structured interviews was conducted. Interviews were completed with 39 young adults with CP (15-30 years, GMFCS I-IV) following a peer-supported, gym-based exercise program called FitSkills.

Results: "Finding what works for me" was the overarching theme. Through their gym experiences, young adults with CP identified four interrelated main themes that influenced whether gym participation "worked" for them, or not: (i) psychological factors, (ii) a "social" participation context, (iii) organisational and logistical support, and (iv) cost. The social context of FitSkills was perceived to positively influence psychological health outcomes and attenuate perceived barriers to participation. Organisational support facilitated their initial attendance, while logistical effort and cost affected ongoing or future gym participation.

Conclusions: Social involvement plays a critical role in positive participation experiences in community exercise settings for young adults with CP. Clinicians supporting exercise participation for this group should prioritise intervention strategies that promote social engagement and mental wellbeing. Collaboration between clinicians, community leisure organisations, and funding bodies may be essential to overcome logistical and financial barriers during the transition to adulthood. Implications for rehabilitation.

The main factor influencing the attendance, involvement, and ongoing exercise preferences of young adults with cerebral palsy (CP) was the social context of the participation experience.Altering the social environment through peer-mentoring can facilitate participation in the gym.Young adults with CP consider mental wellbeing to be an important motivator and outcome of gym-based exercise participation.Mental wellbeing should be prioritised for health promotion for this group.Collaboration between recreation organisations, health services, clinicians, and consumers to address logistical and financial factors can facilitate positive physical activity participation experiences in community settings.

Keywords: Disability; adolescent; inclusion; physical activity; social context.

Determinants of gait dystonia severity in cerebral palsy

Bhooma 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.

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!

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

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.

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.

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.

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.

Jorn Ockerman

Ghent University

Presentation title: Current measurement practices and use of technology among Flemish pediatric physiotherapists.

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 Nathalie De Beukelaer 

KU-Leuven, University of Geneva

Presentation title: Morphological muscle growth in infants and toddlers: a longitudinal study

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

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.

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

Professor 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

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

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

Dr Mari Carmen Lillo 

Miguel Hernandez University

Presentation title: Early intervention in neurodevelopmental disabilities in Europe: sharing experiences 

Dr Lisa Mailleux 

University of Leuven

Presentation: The assessment of grip strength and stereognosis in preschool aged children with and without unilateral cerebral palsy

Álvaro Hidalgo-Robles - PhD Candidate

Professor Nora Shields 

LaTrobe University, Olga Tennison Autism Research Centre

Presentation title: Effect of a community-based intervention (FitSkills) for young people with disability on physical activity participation: a stepped wedge cluster randomised trial

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 

Amy De Roubaix, PhD Candidate

Ghent University

Presentation title: The impact of developmental coordination disorder: preliminary results in Belgium

Anke Arkesteyn, PhD Candidate

KU Leuven

Poster title: Physical activity participation in adolescents with autism spectrum disorder: barriers and facilitations - a qualitative study.

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.

Dr Rachel Toovey 

University of Melbourne

Presentation title: Pathways to participation:understanding the experiences of families of children with disability in gymnastics

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 Dayna Pool

Curtin University and the Healthy Strides Foundation

The final words.... Thank you!

"...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! 😉

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?

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.

Financial cost and quality of life of patients with spinal muscular atrophy identified by symptoms or newborn screening

Tamara 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.

Reliability and Validity of the Youth and Young-Adult Participation and Environment Measure (Y-PEM): An Initial Evaluation

Saeideh 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.

Eye movements and stress during eye-tracking gaming performance in children with dyskinetic cerebral palsy

Saranda 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.

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

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. 

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!

Brain activation changes following motor training in children with unilateral cerebral palsy: An fMRI study

Rodrigo 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.

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 ).

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.

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.

F-words and early intervention ingredients for non-ambulant children with cerebral palsy: A scoping review

Ana 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.

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. 

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 Internet

Jessica 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.

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!

Live from the Small Steps | BIG Impact 2023 Conference!

The art of Science Communication.

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.

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.

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.

Parenting Practices May Buffer the Impact of Adversity on Epigenetic Age Acceleration Among Young Children With Developmental Delays

Alexandra 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.

“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 liquids

Alexander 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.

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.

A family-tailored early motor intervention (EMI-Heart) for infants with complex congenital heart disease: study protocol for a feasibility RCT

Elena 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.

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.

Prioritized strategies to improve diagnosis and early management of cerebral palsy for both Māori and non-Māori families

Sian 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.

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

Down syndrome or Rett syndrome in the family: Parental reflections on sibling experience

Caitlin 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.

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 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.