Relationship between early infant motor repertoire and neurodevelopment on the hammersmith infant neurological examination in a developmentally vulnerable First Nations cohort.

AIM: To implement a culturally-adapted screening program aimed to determine the ability of infant motor repertoire to predict early neurodevelopment on the Hammersmith Infant Neurological Examination (HINE) and improve Australian First Nations families' engagement with neonatal screening. METHODS: A prospective cohort of 156 infants (55 % male, mean (standard deviation [SD]) gestational age 33.8 (4.6) weeks) with early life risk factors for adverse neurodevelopmental outcomes (ad-NDO) participated in a culturally-adapted screening program. Infant motor repertoire was assessed using Motor Optimality Score-revised (MOS-R), captured over two videos, 11-13+6 weeks (V1; <14 weeks) and 14-18 weeks (V2; ≥14 weeks) corrected age (CA). At 4-9 months CA neurodevelopment was assessed on the HINE and classified according to age-specific cut-off and optimality scores as; developmentally 'on track' or high chance of either adverse neurodevelopmental outcome (ad-NDO) or cerebral palsy (CP). RESULTS: Families were highly engaged, 139/148 (94 %) eligible infants completing MOS-R, 136/150 (91 %), HINE and 123 (83 %) both. Lower MOS-R at V2 was associated with reduced HINE scores (ß = 1.73, 95 % confidence interval [CI] = 1.03-2.42) and high chance of CP (OR = 2.63, 95%CI = 1.21-5.69) or ad-NDO (OR = 1.38, 95%CI = 1.10-1.74). The MOS-R sub-category 'observed movement patterns' best predicted HINE, infants who score '4' had mean HINE 19.4 points higher than score '1' (95%CI = 12.0-26.9). Receiver-operator curve analyses determined a MOS-R cut-off of <23 was best for identifying mild to severely reduced HINE scores, with diagnostic accuracy 0.69 (sensitivity 0.86, 95%CI 0.76-0.94 and specificity 0.40, 95 % CI 0.25-0.57). A trajectory of improvement on MOS-R (≥2 point increase in MOS-R from 1st to 2nd video) significantly increased odds of scoring optimally on HINE (OR = 5.91, 95%CI 1.16-29.89) and may be a key biomarker of 'on track' development. INTERPRETATION: Implementation of a culturally-adapted program using evidence-based assessments demonstrates high retention. Infant motor repertoire is associated with HINE scores and the early neurodevelopmental status of developmentally vulnerable First Nations infants.

Efficacy of Early Intervention for Infants With Cerebral Palsy in an LMIC: An RCT.

OBJECTIVE: To test efficacy of a parent-delivered multidomain early intervention (Learning through Everyday Activities with Parents [LEAP-CP]) for infants with cerebral palsy (CP) compared with equal-dose of health advice (HA), on (1) infant development; and (2) caregiver mental health. It was hypothesized that infants receiving LEAP-CP would have better motor function, and caregivers better mental health. METHODS: This was a multisite single-blind randomized control trial of infants aged 12 to 40 weeks corrected age (CA) at risk for CP (General Movements or Hammersmith Infant Neurologic Examination). Both LEAP-CP and HA groups received 15 fortnightly home-visits by a peer trainer. LEAP-CP is a multidomain active goal-directed intervention. HA is based on Key Family Practices, World Health Organization. Primary outcomes: (1) infants at 18 months CA: Pediatric Evaluation of Disability Inventory-Computer Adaptive Test (PEDI-CAT mobility); and (2) caregiver: Depression Anxiety and Stress Scale. RESULTS: Of eligible infants, 153 of 165 (92.7%) were recruited (86 males, mean age 7.1±2.7 months CA, Gross Motor Function Classification System at 18 m CA: I = 12, II = 25, III = 9, IV = 18, V = 32). Final data were available for 118 (77.1%). Primary (PEDI-CAT mobility mean difference = 0.8 (95% CI -1.9 to 3.6) P = .54) and secondary outcomes were similar between-groups. Modified-Intention-To-Treat analysis on n = 96 infants with confirmed CP showed Gross Motor Function Classification System I and IIs allocated to LEAP-CP had significantly better scores on PEDI-CAT mobility domain (mean difference 4.0 (95% CI = 1.4 to 6.5), P = .003) compared with HA. CONCLUSIONS: Although there was no overall effect of LEAP-CP compared with dose-matched HA, LEAP-CP lead to superior improvements in motor skills in ambulant children with CP, consistent with what is known about targeted goal-directed training.

The evolution of nutrition management in children with severe neurological impairment with a focus on cerebral palsy.

Nutritional management of children with severe neurological impairment (SNI) is highly complex, and the profile of this population is changing. The aim of this narrative review was to give the reader a broad description of evolution of the nutritional management of children with SNI in a high resource setting. In the last decade, there has been an emphasis on using multiple anthropometric measures to monitor nutritional status in children with SNI, and several attempts at standardising the approach have been made. Tools such as the Feeding and Nutrition Screening Tool, the Subjective Global Nutrition Assessment, the Eating and Drinking Ability Classification System and the Focus on Early Eating and Drinking Swallowing (FEEDS) toolkit have become available. There has been an increased understanding of how the gut microbiome influences gastrointestinal symptoms common in children with SNI, and the use of fibre in the management of these has received attention. A new diagnosis, 'gastrointestinal dystonia', has been defined. The increased use and acceptance of blended food tube feeds has been a major development in the nutritional management of children with SNI, with reported benefits in managing gastrointestinal symptoms. New interventions to support eating and drinking skill development in children with SNI show promise. In conclusion, as the life expectancy of people with SNI increases due to advances in medical and nutrition care, our approach necessitates a view to long-term health and quality of life. This involves balancing adequate nutrition to support growth, development and well-being while avoiding overnutrition and its associated detrimental long-term effects.

Study protocol: peer delivered early intervention (Learning through Everyday Activities with Parents for Infants at risk of Cerebral Palsy: LEAP-CP) for First Nation Australian infants at high risk of cerebral palsy - an RCT study.

INTRODUCTION: Cerebral palsy (CP) is the most common childhood physical disability with rates approximately 50% higher in First Nations Australian children. This study aims to evaluate a culturally-adapted parent-delivered early intervention programme for First Nations Australian infants at high risk of CP (Learning through Everyday Activities with Parents for infants with CP; LEAP-CP). METHODS AND ANALYSIS: This study is a randomised assessor masked controlled trial. Infants with birth/postnatal risk factors will be eligible for screening. Infants at high risk of CP ('absent fidgety' on General Movements Assessment, and/or 'suboptimal score' on the Hammersmith Infant Neurological Examination) aged 12-52 weeks corrected age will be recruited. Infants and their caregivers will be randomised to receive LEAP-CP (intervention) or health advice (comparator). LEAP-CP is a culturally-adapted programme of 30 home visits delivered by a peer trainer (First Nations Community Health Worker); and includes goal-directed active motor/cognitive strategies, CP learning games and caregiver educational modules. The control arm receives a monthly health advice visit, based on the Key Family Practices, WHO. All infants continue to receive standard (mainstream) Care as Usual. Dual child primary outcomes are Peabody Developmental Motor Scales-2 (PDMS-2) and Bayley Scales of Infant Development-III. The primary caregiver outcome is the Depression, Anxiety and Stress Scale. Secondary outcomes include function, goal attainment, vision, nutritional status and emotional availability. SAMPLE SIZE: total of 86 children (43/group) will enable an effect size of 0.65 on the PDMS-2 to be detected (80% power, α=0.05; 10% attrition). ETHICS AND DISSEMINATION: Ethics approval through Queensland ethics committees and Aboriginal Controlled Community Health Organisation Research Governance Groups, with families providing written informed consent. Findings will be disseminated with guidance from the Participatory Action Research, in collaboration with First Nations communities; peer-reviewed journal publications and national/international conference presentations. TRIAL REGISTRATION NUMBER: ACTRN12619000969167p.

School readiness of children at high risk of cerebral palsy randomised to early neuroprotection and neurorehabilitation: protocol for a follow-up study of participants from four randomised clinical trials.

INTRODUCTION: School readiness includes cognitive, socio-emotional, language and physical growth and development domains which share strong associations with life-course opportunities. Children with cerebral palsy (CP) are at increased risk of poor school readiness compared with their typically developing peers. Recently, earlier diagnosis of CP has allowed interventions to commence sooner, harnessing neuroplasticity. First, we hypothesise that early referral to intervention for children at-risk of CP will lead to improved school readiness at 4-6 years relative to placebo or care as usual. Second, we hypothesise that receipt of early diagnosis and early intervention will lead to cost-savings in the form of reduced healthcare utilisation. METHODS AND ANALYSIS: Infants identified as at-risk of CP ≤6 months corrected age (n=425) recruited to four randomised trials of neuroprotectants (n=1), early neurorehabilitation (n=2) or early parenting support (n=1) will be re-recruited to one overarching follow-up study at age 4-6 years 3 months. A comprehensive battery of standardised assessments and questionnaires will be administered to assess all domains of school readiness and associated risk factors. Participants will be compared with a historical control group of children (n=245) who were diagnosed with CP in their second year of life. Mixed-effects regression models will be used to compare school readiness outcomes between those referred for early intervention versus placebo/care-as-usual. We will also compare health-resource use associated with early diagnosis and intervention versus later diagnosis and intervention. ETHICS AND DISSEMINATION: The Children's Health Queensland Hospital and Health Service, The University of Queensland, University of Sydney, Monash University and Curtin University Human Research Ethics Committees have approved this study. Informed consent will be sought from the parent or legal guardian of every child invited to participate. Results will be disseminated in peer-reviewed journals, scientific conferences and professional organisations, and to people with lived experience of CP and their families. TRIAL REGISTRATION NUMBER: ACTRN12621001253897.

Early detection of Australian Aboriginal and Torres Strait Islander infants at high risk of adverse neurodevelopmental outcomes at 12 months corrected age: LEAP-CP prospective cohort study protocol.

INTRODUCTION: Neurodevelopmental disorders (NDD), including cerebral palsy (CP), autism spectrum disorder (ASD) and foetal alcohol spectrum disorder (FASD), are characterised by impaired development of the early central nervous system, impacting cognitive and/or physical function. Early detection of NDD enables infants to be fast-tracked to early intervention services, optimising outcomes. Aboriginal and Torres Strait Islander infants may experience early life factors increasing their risk of neurodevelopmental vulnerability, which persist into later childhood, further compounding the health inequities experienced by First Nations peoples in Australia. The LEAP-CP prospective cohort study will investigate the efficacy of early screening programmes, implemented in Queensland, Australia to earlier identify Aboriginal and Torres Strait Islander infants who are 'at risk' of adverse neurodevelopmental outcomes (NDO) or NDD. Diagnostic accuracy and feasibility of early detection tools for identifying infants 'at risk' of a later diagnosis of adverse NDO or NDD will be determined. METHODS AND ANALYSIS: Aboriginal and/or Torres Strait Islander infants born in Queensland, Australia (birth years 2020-2022) will be invited to participate. Infants aged <9 months corrected age (CA) will undergo screening using the (1) General Movements Assessment (GMA); (2) Hammersmith Infant Neurological Examination (HINE); (3) Rapid Neurodevelopmental Assessment (RNDA) and (4) Ages and Stages Questionnaire-Aboriginal adaptation (ASQ-TRAK). Developmental outcomes at 12 months CA will be determined for: (1) neurological (HINE); (2) motor (Peabody Developmental Motor Scales 2); (3) cognitive and communication (Bayley Scales of Infant Development III); (4) functional capabilities (Paediatric Evaluation of Disability Inventory-Computer Adaptive Test) and (5) behaviour (Infant Toddler Social and Emotional Assessment). Infants will be classified as typically developing or 'at risk' of an adverse NDO and/or specific NDD based on symptomology using developmental and diagnostic outcomes for (1) CP (2) ASD and (3) FASD. The effects of perinatal, social and environmental factors, caregiver mental health and clinical neuroimaging on NDOs will be investigated. ETHICS AND DISSEMINATION: Ethics approval has been granted by appropriate Queensland ethics committees; Far North Queensland Health Research Ethics Committee (HREC/2019/QCH/50533 (Sep ver 2)-1370), the Townsville HHS Human Research Ethics Committee (HREC/QTHS/56008), the University of Queensland Medical Research Ethics Committee (2020000185/HREC/2019/QCH/50533) and the Children's Health Queensland HHS Human Research Ethics Committee (HREC/20/QCHQ/63906) with governance and support from local First Nations communities. Findings from this study will be disseminated via peer-reviewed publications and conference presentations. TRIAL REGISTRATION NUMBER: ACTRN12619000969167.

Mini-EDACS: Development of the Eating and Drinking Ability Classification System for young children with cerebral palsy.

AIM: To develop and test Mini-EDACS to describe developing eating and drinking abilities of children with cerebral palsy (CP) aged between 18 and 36 months. METHOD: The existing Eating and Drinking Ability Classification System (EDACS) was modified to define Mini-EDACS content. Mini-EDACS was developed in three stages: (1) EDACS was modified after application to videos of standardized feeding evaluations of children with CP aged 18 to 36 months (n = 130); (2) refined content and validity of Mini-EDACS was established through an international Delphi survey; (3) interobserver reliability was assessed by comparing Mini-EDACS levels assigned by speech and language therapists (SaLTs) from video data and parent report. RESULTS: Mini-EDACS provides age-appropriate descriptions for children aged 18 to 36 months with CP. Eighty-nine stakeholders participated in the Delphi survey; required levels of agreement were met after one round (i.e. >80% agreement). Thirteen SaLTs completed paired ratings from 43 video recordings: absolute agreement was 58% (kappa 0.43; intraclass correlation coefficient 0.78; 95% confidence interval 0.63-0.87). INTERPRETATION: Mini-EDACS provides a valid system for classifying eating and drinking performance of children with CP under 3 years old. Results suggest moderate agreement and good reliability when rating Mini-EDACS levels from video recordings of young children with CP.

Efficacy of early interventions with active parent implementation in low-and-Middle income countries for young children with cerebral palsy to improve child development and parent mental health outcomes: a systematic review.

PURPOSE: To determine the efficacy of interventions with active parent implementation for young children with cerebral palsy (CP) to improve child and parent outcomes in low-middle income countries (LMICs). METHODS: Five databases were systematically searched. Randomised or comparison studies evaluating interventions with the training of the parent and/or home practice components to implement with their child with CP (<60 months of age) were included. The modified Downs and Black scale assessed methodological quality. Data were pooled to calculate mean differences and 95% confidence intervals (95% CI). RESULTS: Searches yielded 189 unique articles. 11 studies from ten papers of moderate to high quality were included. Parent-implemented general developmental interventions had a small negative effect on gross motor function compared to interventionist-implemented therapy. Parent-implemented upper limb training compared to interventionist-implemented neurodevelopmental therapy had a small positive effect on bimanual hand function. Parent-implemented functional feeding training had a large significant effect on chewing function compared to parent-implemented oral motor exercises. Parent-implemented interventions targeting general child development and feeding had mixed effects on parent stress outcomes. CONCLUSIONS: Parent-implemented interventions in LMICs are promising to improve child bimanual hand and chewing function. Further research evaluating the efficacy of parent-implemented interventions to improve parent mental health is needed.Implications for Rehabilitation:Intensive motor training-based interventions with active parent implementation were effective to improve child gross motor, bimanual hand, and chewing function in young children with CP compared to passive, generic interventionist-implemented or health education interventions.Interventions with active parent implementation had mixed results to improve parent mental health, however, this was frequently not assessed. A consistent level of support and training provided to parents may be required to have a positive effect on parent stress.To further understand the feasibility of early interventions with active parent implementation in LMICs, data on adherence to home practice dose and session attendance and a qualitative understanding of contextual and child factors influencing parent implementation is needed.

Mothers' perspectives on the influences shaping their early experiences with infants at risk of cerebral palsy in India.

BACKGROUND: Accurate diagnosis of cerebral palsy (CP) high-risk status is now possible in infants less than six months corrected age. Parents play a central role in providing nurturing care and implementing early intervention approaches. To design interventions tailored to needs of parents and understand how to improve parental support, this study aimed to understand the influences shaping parent experiences with an infant at high-risk of CP in West Bengal, India. METHODS AND PROCEDURES: This phenomenological qualitative study was conducted with parents of infants at high-risk of CP in West Bengal, India. Individual in-depth interviews explored experiences with health providers, supports for caregiving and challenges of parenting. Interviews were conducted in English with concurrent translation and analysed using thematic analysis. OUTCOMES AND RESULTS: Main themes included: limited finances and social networks shape decisions and caregiving practices; trust in the formal health care system; views of disability including explanations for their infant's condition and expectations for the child's future, and everyday adaptations required to meet infants' needs. CONCLUSIONS AND IMPLICATIONS: Low cost models of early intervention may alleviate the financial burden and stress on families. Dependence on health care professionals for care management is a barrier to family-delivered approaches to care.

The Pediatric Subjective Global Nutrition Assessment Classifies More Children With Cerebral Palsy as Malnourished Compared With Anthropometry.

BACKGROUND: Nutrition assessment is multidimensional; however, much of the literature examining the nutritional status of children with cerebral palsy (CP) focuses on a single dimension. OBJECTIVE: The aim of the study was to evaluate nutritional status in children and adolescents with CP by comparing results from the Pediatric Subjective Global Nutrition Assessment (SGNA) with results from traditional anthropometric measures. DESIGN: This study was a cross-sectional observational study. PARTICIPANTS/SETTING: This study was conducted in a tertiary hospital outpatient setting in Brisbane, Australia, from February 2017 to March 2018. A total of 89 children (63 boys) with CP aged between 2 and 18 years of age were included. All Gross Motor Function Classification System levels were observed. The majority of children were in Gross Motor Function Classification System I and II (57, 64%) compared with Gross Motor Function Classification System III to V (32, 36%). Children with feeding tubes and those acutely unwell or hospitalized were excluded. MAIN OUTCOME MEASURES: Children were classified as well nourished, moderately malnourished, or severely malnourished by dietitians using the SGNA. Weight, height, body mass index (BMI), triceps skinfold thickness, subscapular skinfold thickness, and mid upper arm circumference were measured and converted to z scores to account for age and sex differences. Moderate malnutrition was defined by z scores -2.00 to -2.99 and severe malnutrition as ≤-3.00 z scores. STATISTICAL ANALYSIS PERFORMED: Multinomial logistic analyses were used to compare results from the SGNA and each single measurement. Continuous outcomes were transformed into z scores. Agreement was assessed with 2 categories: not malnourished and malnourished. Comparison statistics included percent agreement, sensitivity, and specificity. RESULTS: More children were classified as moderately or severely malnourished by SGNA than any of the anthropometric z score cutoffs. The majority of children were well nourished (n = 63) with 20 (22%) moderately malnourished and 6 (7%) severely malnourished by SGNA. The SGNA classified 11 children as malnourished that were not classified as malnourished by BMI. Children with moderate or severe malnutrition by SGNA had lower weight (P < .001, P < .001), BMI (P < .001, P < .001), mid upper arm circumference (P < .001, P < .001), triceps skinfold thickness (P = .01, P = .007), and subscapular skinfold thickness (P = .005, P = .02) z scores than well-nourished children. CONCLUSION: The SGNA identified more potentially malnourished children including children classified as well nourished by the single measurements such as BMI, height, and weight. The SGNA provided a clinically useful multidimensional approach to nutrition assessment for children with CP.

Development and validation of a screening tool for feeding/swallowing difficulties and undernutrition in children with cerebral palsy.

AIM: To develop and validate a screening tool for feeding/swallowing difficulties and/or undernutrition in children with cerebral palsy (CP). METHOD: This cross-sectional, observational study included 89 children with CP (63 males, 26 females; median age 6y 0mo; interquartile range 4y 0mo-8y 11mo), across all Gross Motor Function Classification System levels. Children with feeding tubes were excluded. Children were classified as well-nourished or moderately to severely undernourished, using the paediatric Subjective Global Nutrition Assessment. Eating and drinking abilities were classified using the Eating and Drinking Ability Classification System (EDACS) from mealtime observation and videofluoroscopic swallow studies when indicated. Parents/caregivers answered 33 screening questions regarding their child's feeding/swallowing abilities and nutritional status. The diagnostic ability of each question for identifying children with feeding/swallowing difficulties and undernutrition was calculated and the combination of questions with the highest sensitivity and specificity identified. RESULTS: Feeding difficulties impacted on swallow safety in 26 children (29%) and 26 children (29%) were moderately or severely undernourished. The 4-item final tool had high sensitivity and specificity for identifying children with feeding/swallowing difficulties (81% and 79% respectively) and undernutrition (72% and 75% respectively). The tool successfully identified 100 per cent of children with severe undernutrition and 100 per cent of those classified as EDACS level IV or V. INTERPRETATION: Screening for feeding/swallowing difficulties and undernutrition will enable early identification, assessment, and management for those children in need. WHAT THIS PAPER ADDS: A screening tool with high sensitivities and specificities for identifying children with feeding/swallowing difficulties and undernutrition. The tool identified 100 per cent of children with severe undernutrition. The tool identified 100 per cent of children in Eating and Drinking Ability Classification System levels IV or V.

Community-based parent-delivered early detection and intervention programme for infants at high risk of cerebral palsy in a low-resource country (Learning through Everyday Activities with Parents (LEAP-CP): protocol for a randomised controlled trial.

INTRODUCTION: Cerebral palsy (CP) is the most common childhood physical disability, with 80% estimated to be in low-middle-income countries. This study aims to (1) determine the accuracy of General Movements (GMs)/Hammersmith Infant Neurological Examination (HINE) for detecting CP at 18 months corrected age (CA); (2) determine the effectiveness of a community-based parent-delivered early intervention for infants at high risk of CP in West Bengal, India (Learning through Everyday Activities with Parents for infants with CP; LEAP-CP). METHODS: This study comprises two substudies: (1) a study of the predictive validity of the GMs and HINE for detecting CP; (2) randomised, double-blinded controlled trial of a novel intervention delivered through peer trainers (Community Disability Workers, CDW) compared with health advice (15 fortnightly visits). 142 infants at high risk of CP ('absent fidgety' GMs; 'high risk score' on HINE) aged 12-40 weeks CA will be recruited to the intervention substudy, with infants randomised based on a computer-generated sequence. Researchers will be masked to group allocation, and caregivers and CDWs naïve to intervention status. Visits will include therapeutic modules (goal-directed active motor/cognitive strategies and LEAP-CP games) and parent education. Health advice is based on the Integrated Management of Childhood Illness, WHO. Infants will be evaluated at baseline, post intervention and 18 months CA. The primary hypothesis is that infants receiving LEAP-CP will have greater scaled scores on the Pediatric Evaluation of Disability Inventory-Computer Adaptive Test (mobility domain) at 18 months compared with health advice. Secondary outcomes include infant functional motor, cognitive, visual and communication development; infant growth; maternal mental health. ETHICS AND DISSEMINATION: This study is approved through appropriate Australian and Indian ethics committees (see in text) with families providing written informed consent. Findings from this trial will be disseminated through peer-reviewed journal publications and conference presentations. TRIAL REGISTRATION NUMBER: 12616000653460p; Pre-results.

Oropharyngeal Dysphagia and Cerebral Palsy.

OBJECTIVES: To determine the progression of oropharyngeal dysphagia (OPD) in preschool-aged children with cerebral palsy (CP) according to gross motor function. It was hypothesized that fewer children would have OPD at 60 months compared with 18 to 24 months (predominately Gross Motor Function Classification System [GMFCS] I-II). METHODS: Longitudinal population-based cohort of 179 children (confirmed CP diagnosis, born in Queensland in 2006-2009, aged 18-60 months at study entry [mean = 34.1 months ± 11.9; 111 boys; GMFCS I = 46.6%, II = 12.9%, III = 15.7%, IV = 10.1%, and V = 14.6%]). Children had a maximum of 3 assessments (median = 3, total n = 423 assessments). OPD was classified by using the Dysphagia Disorders Survey part 2 and rated from video by a certified pediatric speech pathologist. GMFCS was used to classify children's gross motor function. RESULTS: OPD prevalence reduced from 79.7% at 18 to 24 months to 43.5% at 60 months. There were decreasing odds of OPD with increasing age (odds ratio [OR] = 0.92 [95% confidence interval (CI) 0.90 to 0.95]; P < .001) and increasing odds with poorer gross motor function (OR = 6.2 [95% CI 3.6 to 10.6]; P < .001). This reduction was significant for children with ambulatory CP (GMFCS I-II, OR = 0.93 [95% CI 0.90 to 0.96]; P < .001) but not significant for children from GMFCS III to V (OR [III] = 1.0 [95% CI 0.9 to 1.1]; P = .897; OR [IV-V] = 1.0 [95% CI 1.0 to 1.1]; P = .366). CONCLUSIONS: Half of the OPD present in children with CP between 18 and 24 months resolved by 60 months, with improvement most common in GMFCS I to II. To more accurately detect and target intervention at children with persisting OPD at 60 months, we suggest using a more conservative cut point of 6 out of 22 on the Dysphagia Disorders Survey for assessments between 18 and 48 months.

Parent-reported indicators for detecting feeding and swallowing difficulties and undernutrition in preschool-aged children with cerebral palsy.

AIM: To determine the most accurate parent-reported indicators for detecting (1) feeding/swallowing difficulties and (2) undernutrition in preschool-aged children with cerebral palsy (CP). METHOD: This was a longitudinal, population-based study, involving 179 children with CP, aged 18 to 60 months (mean 34.1mo [SD 11.9] at entry, 111 males, 68 females [Gross Motor Function Classification System level I, 84; II, 23; III, 28; IV, 18; V, 26], 423 data points). Feeding/swallowing difficulties were determined by the Dysphagia Disorders Survey and 16 signs suggestive of pharyngeal phase impairment. Undernutrition was indicated by height-weight and skinfold composite z-scores less than -2. Primary parent-reported indicators included mealtime duration, mealtime stress, concern about growth, and respiratory problems. Other indicators were derived from a parent feeding questionnaire, including 'significant difficulty eating and drinking'. Data were analysed using multilevel mixed-effects regression and diagnostic statistics. RESULTS: Primary parent-reported indicators associated with feeding/swallowing were 'moderate-severe parent stress' (odds ratio [OR]=3.2 [95% confidence interval {CI} 1.3-7.8]; p<0.01), 'moderate-severe concern regarding growth' (OR=4.5 [95% CI 1.7-11.9]; p<0.01), and 'any respiratory condition' (OR=1.8 [95% CI 1.4-5.8]; p<0.01). The indicator associated with undernutrition was 'moderate-severe concern regarding growth' (height-weight OR=13.5 [95% CI 3.0-61.3]; p<0.01; skinfold OR=19.1 [95% CI 3.7-98.9]; p<0.01). 'Significant difficulty eating and drinking' was most sensitive/specific for feeding outcome (sensitivity=58.6%, specificity=100.0%), and 'parent concern regarding growth' for undernutrition (sensitivity=77.8%, specificity=77.0%). INTERPRETATION: Parent-reported indicators are feasible for detecting feeding and swallowing difficulties and undernutrition in children with CP, but need formal validation. WHAT THIS PAPER ADDS: Parent-reported indicators can detect feeding/swallowing difficulties and undernutrition in children with cerebral palsy. Most accurate screening questions were 0-10 scales for 'difficulty eating' and 'difficulty drinking'. Supplementation of these scales with additional indicators would improve detection.

Hazardous child labor in Nepal: The case of brick kilns.

Hazardous child labor in Nepal is a serious concern, particularly in the brick kiln industry. Although a range of interventions have been implemented in Nepal to address hazardous child labor, there is a lack of research to both measure success and shape further development in interventions that integrate sound child protection practices to ensure the wellbeing of all children. This paper provides a review of the literature outlining interventions for children working in brick kilns in Nepal, and presents preliminary case study findings of one current intervention in the Kathmandu Valley. The paper highlights the strength of applying foundational child protection principles and advocates for the development and implementation of future programs underpinned by broad civil society principles within a child rights and protection framework.

PREDICT-CP: study protocol of implementation of comprehensive surveillance to predict outcomes for school-aged children with cerebral palsy.

OBJECTIVES: Cerebral palsy (CP) remains the world's most common childhood physical disability with total annual costs of care and lost well-being of $A3.87b. The PREDICT-CP (NHMRC 1077257 Partnership Project: Comprehensive surveillance to PREDICT outcomes for school age children with CP) study will investigate the influence of brain structure, body composition, dietary intake, oropharyngeal function, habitual physical activity, musculoskeletal development (hip status, bone health) and muscle performance on motor attainment, cognition, executive function, communication, participation, quality of life and related health resource use costs. The PREDICT-CP cohort provides further follow-up at 8-12 years of two overlapping preschool-age cohorts examined from 1.5 to 5 years (NHMRC 465128 motor and brain development; NHMRC 569605 growth, nutrition and physical activity). METHODS AND ANALYSES: This population-based cohort study undertakes state-wide surveillance of 245 children with CP born in Queensland (birth years 2006-2009). Children will be classified for Gross Motor Function Classification System; Manual Ability Classification System, Communication Function Classification System and Eating and Drinking Ability Classification System. Outcomes include gross motor function, musculoskeletal development (hip displacement, spasticity, muscle contracture), upper limb function, communication difficulties, oropharyngeal dysphagia, dietary intake and body composition, participation, parent-reported and child-reported quality of life and medical and allied health resource use. These detailed phenotypical data will be compared with brain macrostructure and microstructure using 3 Tesla MRI (3T MRI). Relationships between brain lesion severity and outcomes will be analysed using multilevel mixed-effects models. ETHICS AND DISSEMINATION: The PREDICT-CP protocol is a prospectively registered and ethically accepted study protocol. The study combines data at 1.5-5 then 8-12 years of direct clinical assessment to enable prediction of outcomes and healthcare needs essential for tailoring interventions (eg, rehabilitation, orthopaedic surgery and nutritional supplements) and the projected healthcare utilisation. TRIAL REGISTRATION NUMBER: ACTRN: 12616001488493.

The Eating and Drinking Ability Classification System in a population-based sample of preschool children with cerebral palsy.

AIM: To determine (1) the reproducibility of the Eating and Drinking Ability Classification System (EDACS); (2) EDACS classification distribution in a population-based cohort with cerebral palsy (CP); and (3) the relationships between the EDACS and clinical mealtime assessment, other classifications, and health outcomes. METHOD: This was a cross-sectional population-based cohort study of 170 children with CP at 3 years to 5 years (mean 57.6mo, standard deviation [SD] 8.3mo; 105 males, n=65 females). Functional abilities were representative of a population sample (Gross Motor Function Classification System level I=74, II=34, III=21, IV=18, V=23). The EDACS was the primary classification of mealtime function. The Dysphagia Disorders Survey was the clinical mealtime assessment. Gross motor function was classified using the Gross Motor Function Classification System. RESULTS: EDACS classification had 88.3% intrarater agreement (κ=0.84, intraclass correlation coefficient=0.95; p<0.001) and 51.7% interrater agreement (κ=0.36, intraclass correlation coefficient=0.79; p<0.001). In total, 56.5% of children were classified as EDACS level I. There was a strong stepwise relationship between the Dysphagia Disorders Survey and EDACS (r=0.96, p<0.001). Parental stress (odds ratio=1.3, p=0.05) and feeding tubes (odds ratio=6.4, p<0.001) were significantly related to more limited function on the EDACS. INTERPRETATION: The EDACS presents a viable adjunct to clinical assessment of feeding skills in children with CP for use in surveillance trials and clinical practice. A rating addendum would be a useful contribution to the tool to enhance reproducibility.

Body composition, diet, and physical activity: a longitudinal cohort study in preschoolers with cerebral palsy.

BACKGROUND: Altered body composition in children with cerebral palsy (CP) could be due to differences in energy intake, habitual physical activity (HPA), and sedentary time. OBJECTIVE: We investigated the longitudinal relation between the weight-for-age z score (WZ), fat-free mass (FFM), percentage of body fat (%BF), and modifiable lifestyle factors for all Gross Motor Function Classification System (GMFCS) levels (I-V). DESIGN: The study was a longitudinal population-based cohort study of children with CP who were aged 18-60 mo (364 assessments in 161 children; boys: 61%; mean ± SD recruitment age: 2.8 ± 0.9 y; GMFCS: I, 48%; II, 11%; III, 15%; IV, 11%; and V, 15%). A deuterium dilution technique or bioelectrical impedance analysis was used to estimate FFM, and the %BF was calculated. Energy intake, HPA, and sedentary time were measured with the use of a 3-d weighed food diary and accelerometer wear. Data were analyzed with the use of a mixed-model analysis. RESULTS: Children in GMFCS group I did not differ from age- and sex-specific reference children with typical development for weight. Children in GMFCS group IV were lighter-for-age, and children in GMFCS group V had a lower FFM-for-height than those in GMFCS group I. Children in GMFCS groups II-V had a higher %BF than that of children in GMFCS group I, with the exception of orally fed children in GMFCS group V. The mean %BF of children with CP classified them as overfat or obese. There was a positive association between energy intake and FFM and also between HPA level and FFM for children in GMFCS group I. CONCLUSIONS: Altered body composition was evident in preschool-age children with CP across functional capacities. Gross motor function, feeding method, energy intake, and HPA level in GMFCS I individuals are the strongest predictors of body composition in children with CP between the ages of 18 and 60 mo.

Oropharyngeal dysphagia in children with cerebral palsy: comparisons between a high- and low-resource country.

PURPOSE: There is paucity of research investigating oropharyngeal dysphagia (OPD) in young children with cerebral palsy (CP), and most studies explore OPD in high-resource countries. This study aimed at determining the proportion and severity of OPD in preschool children with CP in Bangladesh, compared to Australia. METHOD: Cross-sectional, comparison of two cohorts. Two hundred and eleven children with CP aged 18-36 months, 81 in Bangladesh (mean = 27.6 months, 61.7% males), and 130 in Australia (mean = 27.4 months, 62.3% males). The Dysphagia Disorders Survey (DDS) - Part 2 was the primary OPD outcome for proportion and severity of OPD. Gross motor skills were classified using the Gross Motor Function Classification System (GMFCS), motor type/distribution. RESULTS: (i) Bangladesh sample: proportion OPD = 68.1%; severity = 10.4 SD = 7.9. Australia sample: proportion OPD = 55.7%; severity = 7.0 SD = 7.5. (ii) There were no differences in the proportion or severity of OPD between samples when stratified for GMFCS (OR = 2.4, p = 0.051 and ß = 1.2, p = 0.08, respectively). CONCLUSIONS: Despite overall differences in patterns of OPD between Bangladesh and Australia, proportion and severity of OPD (when adjusted for the functional gross motor severity of the samples) were equivalent. This provides support for the robust association between functional motor severity and OPD proportion/severity in children with CP, regardless of the resource context. Implications for Rehabilitation The proportion and severity of OPD according to gross motor function level were equivalent between high- and low-resource countries (LCs). Literature from high-resource countries may be usefully interpreted by rehabilitation professionals for low-resource contexts using the GMFCS as a framework. The GMFCS is a useful classification in LCs to improve earlier detection of children at risk of OPD and streamline management pathways for optimal nutritional outcomes. Rehabilitation professionals working in LCs are likely to have a caseload weighted towards GMFCS III-V, with less compensatory OPD management options available (such as non-oral nutrition through tubes).

Longitudinal Growth, Diet, and Physical Activity in Young Children With Cerebral Palsy.

OBJECTIVES: To describe the longitudinal relationship between height-for-age z score (HZ), growth velocity z score, energy intake, habitual physical activity (HPA), and sedentary time across Gross Motor Function Classification System (GMFCS) levels I to V in preschoolers with cerebral palsy (CP). METHODS: Children with CP (n = 175 [109 (62.2%) boys]; mean recruitment age 2 years, 10 months [SD 11 months]; GMFCS I = 83 [47.2%], II = 21 [11.9%], III = 28 [15.9%], IV = 19 [10.8%], V = 25 [14.2%]) were assessed 440 times between the age of 18 months and 5 years. Height/length ratio was measured or estimated via knee height. Population-based standards were used to calculate HZ and growth velocity z-score by age and sex categories. Feeding method (oral or tube) and gestational age at birth (GA) were collected from parents. Three-day ActiGraph and food diary data were used to measure HPA/sedentary time ratio and energy intake, respectively. Oropharyngeal dysphagia was rated with the Dysphagia Disorder Survey (part 2, Pediatric). Analysis was undertaken with mixed-effects regression models. RESULTS: For GMFCS level I, height and growth velocity did not differ from population-level growth standards. Children in levels II to V were significantly shorter, and those in levels III to V grew significantly more slowly than those in level I. There was a significant positive association between HZ and GA at all GMFCS levels. Energy intake, HPA, sedentary time, Dysphagia Disorder Survey score, and feeding method were not significantly associated with either height or growth velocity once GMFCS level was accounted for. CONCLUSIONS: Functional status and GA should be considered when assessing the growth of a child with CP. Research into interventions aimed at increasing active movement in GMFCS levels III to V and their efficacy in improving growth and health outcomes is warranted.