Clinical utility and psychometric properties of tools for early detection of developmental concerns and disability in young children: A scoping review.

AIM: To explore the clinical utility and psychometric properties of standardized tools for the early detection of developmental concerns or disability in young children. METHOD: Systematic reviews and clinical practice guidelines containing psychometric data on tools appropriate for use with children from birth to 5 years 11 months were searched for in MEDLINE, CINAHL, Embase, and PsycINFO for the years 2000 to 2023, with no language restrictions. RESULTS: Eighty-six systematic reviews and six clinical practice guidelines guided identification of tools. A total of 246 tools were identified across domains of neurological, motor, cognition, communication/language, social-emotional, sensory processing, and/or specific diagnostic conditions of attention-deficit/hyperactivity disorder, autism spectrum disorder, cerebral palsy, developmental coordination disorder, and fetal alcohol spectrum disorder. After critical evaluation, 67 tools were included in the recommendations. Recommendations for screening and diagnostic assessment tools were based on best available evidence for predictive and discriminative validity, diagnostic accuracy, together with consideration of resource use and accessibility. INTERPRETATION: This comprehensive scoping review provides recommendations on the best tools for primary care, medical, allied health professionals, nursing, and other health workers to detect and identify developmental concerns or disability in young children using evidence-based tools.

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.

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.

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.

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.

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.

Longitudinal Study of Oropharyngeal Dysphagia in Preschool Children With Cerebral Palsy.

OBJECTIVES: To determine changes in prevalence and severity of oropharyngeal dysphagia (OPD) in children with cerebral palsy (CP) and the relationship to health outcomes. DESIGN: Longitudinal cohort study. SETTING: Community and tertiary institutions. PARTICIPANTS: Children (N=53, 33 boys) with a confirmed diagnosis of CP assessed first at 18 to 24 months (Assessment 1: mean age ± SD, 22.9±2.9 mo corrected age; Gross Motor Function Classification System [GMFCS]: I, n=22; II, n=7; III, n=11; IV, n=5; V, n=8) and at 36 months (Assessment 2). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: OPD was classified using the Dysphagia Disorders Survey (DDS) and signs suggestive of pharyngeal dysphagia. Nutritional status was measured using Z scores for weight, height, and body mass index (BMI). Gross motor skills were classified on GMFCS and motor type/distribution. RESULTS: Prevalence of OPD decreased from 62% to 59% between the ages of 18 to 24 months and 36 months. Thirty percent of children had an improvement in severity of OPD (greater than smallest detectable change), and 4% had worse OPD. Gross motor function was strongly associated with OPD at both assessments, on the DDS (Assessment 1: odds ratio [OR]=20.3, P=.011; Assessment 2: OR=28.9, P=.002), pharyngeal signs (Assessment 1: OR=10.6, P=.007; Assessment 2: OR=15.8, P=.003), and OPD severity (Assessment 1: ß=6.1, P<.001; Assessment 2: ß=5.5, P<.001). OPD at 18 to 24 months was related to health outcomes at 36 months: low Z scores for weight (adjusted ß=1.2, P=.03) and BMI (adjusted ß=1.1, P=.048), and increased parent stress (adjusted OR=1.1, P=.049). CONCLUSIONS: Classification and severity of OPD remained relatively stable between 18 to 24 months and 36 months. Gross motor function was the best predictor of OPD. These findings contribute to developing more effective screening processes that consider critical developmental transitions that are anticipated to present challenges for children from each of the GMFCS levels.

Food and fluid texture consumption in a population-based cohort of preschool children with cerebral palsy: relationship to dietary intake.

AIM: To determine the texture constitution of children's diets and its relationship to oropharyngeal dysphagia (OPD), dietary intake, and gross motor function in young children with cerebral palsy (CP). METHOD: A cross-sectional, population-based cohort study comprising 99 young children with CP (65 males, 35 females) aged 18 to 36 months (mean age 27mo; Gross Motor Function Classification System [GMFCS] level I, n=45; II, n=13; III, n=14; IV, n=10; V, n=17). CP subtypes were classified as spastic unilateral (n=35), spastic bilateral (n=49), dyskinetic (n=5), and other (n=10), in accordance with the criteria of the Surveillance of Cerebral Palsy in Europe. Habitual dietary intake of food textures, energy, and water were determined from parent-completed 3-day weighed food records. Parent-reported feeding ability of food textures was reported on the Pediatric Evaluation of Disability Inventory and a feeding questionnaire. OPD was classified based on clinical feeding assessment using the Dysphagia Disorders Survey (rated by a certified assessor, KAB) and a subjective Swallowing Safety Recommendation (classified by a paediatric speech pathologist, KAB). RESULTS: Food/fluid textures were modified for 39% of children. Children with poorer gross motor function tended to receive a greater proportion of energy from fluids (GMFCS levels IV-V: ß=0.9, p=0.002) in their diets and fewer chewable foods (level III: ß=-0.7, p=0.03; levels IV-V: ß=-1.8, p<0.001) compared to level I to II participants. Fluids represented a texture for which children frequently had OPD and the texture most frequently identified as unsafe (or recommended for instrumental assessment). INTERPRETATION: These findings indicate that swallowing safety, feeding efficiency, and energy/water intake should be considered when providing feeding recommendations for children with CP.

Validity and reproducibility of measures of oropharyngeal dysphagia in preschool children with cerebral palsy.

AIM: The aim of the study was to determine the best measure to discriminate between those with oropharyngeal dysphagia (OPD) and those without OPD, among young children with cerebral palsy (CP). METHOD: We carried out a cross-sectional population-based study involving 130 children with CP aged between 18 months and 36 months (mean 27.4mo; 81 males, 49 females) classified according to the Gross Motor Function Classification Scale (GMFCS) as level I (n=57), II (n=15), III (n=23), IV (n=12), or V (n=23). Forty children with CP (mean 28.5mo; 21 males,19 females, eight for each GMFCS level) were included in the reproducibility sub-study, and 40 children with typical development (mean 26.2mo; 18 males, 22 females) were included in the validity sub-study. OPD was assessed using the Dysphagia Disorders Survey (DDS), Pre-Speech Assessment Scale (PSAS), and Schedule for Oral Motor Assessment (SOMA). We analysed reproducibility using inter- and intrarater agreement (percentage) and reliability (kappa values and intraclass correlation coefficients). Construct validity was assessed as concordance between measures (SOMA, DDS, and PSAS). In the absence of a criterion standard measure for OPD, prevalence was estimated using latent class variable analysis. Data from the children with typical development were used to propose modified OPD cut-points for discriminative validity. RESULTS: All measures had strong agreement (>85%) for inter- and intrarater reliability. The SOMA had the best specificity (100.0%), but lacked sensitivity (53.0%), whereas the DDS and PSAS had high sensitivity (each 100.0%) but lacked specificity (47.1% and 70.6% respectively). OPD prevalence when calculated using the web-based estimation was 65.4%, which was similar to the estimate from the modified cut-points. INTERPRETATION: Using the sample of children with typical development and modified cut-points, OPD prevalence was lower than estimates with standard scoring. We propose using these modified cut-points when administering the DDS, PSAS or SOMA in young children with CP.

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.

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.

Clinimetrics of measures of oropharyngeal dysphagia for preschool children with cerebral palsy and neurodevelopmental disabilities: a systematic review.

AIM: The aim of this study was to determine the psychometric properties and clinical utility of objective measures of oropharyngeal dysphagia (OPD) in children with cerebral palsy or neurodevelopmental disabilities aged 12 months to 5 years. METHOD: Five electronic databases were searched to identify measures of OPD. The Consensus-based Standards for the Selection of Measurement Instruments (COSMIN) Checklist was used to assess psychometric properties and a Modified CanChild Outcome Rating Form was used for clinical utility. RESULTS: Nine measures of OPD from 27 papers were assessed: the Brief Assessment of Motor Function - Oral Motor Deglutition Scale; the Behavioral Assessment Scale of Oral Functions in Feeding; the Dysphagia Disorders Survey; the Feeding Behaviour Scale; the Functional Feeding Assessment, modified; the Gisel Video Assessment; the Oral Motor Assessment Scale; the Pre-Speech Assessment Scale; and the Schedule for Oral Motor Assessment. INTERPRETATION: The Schedule for Oral Motor Assessment and the Functional Feeding Assessment, modified, proved to be the strongest measures based on published psychometric properties of validity and reliability. The Schedule for Oral Motor Assessment and the Dysphagia Disorders Survey were found to have the strongest clinical utility. Further studies to test the psychometric properties of existing measures, in particular predictive validity, responsiveness, and test-retest reliability, would be beneficial for selecting an appropriate measure for both clinical and research contexts.

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.

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.

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.

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.

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.