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 physical activity and sedentary behaviour in preschool-aged children with cerebral palsy across all functional levels.

AIM: To investigate longitudinal changes of habitual physical activity (HPA) and sedentary time in children with cerebral palsy (CP) aged 1 year 6 months to 5 years across all functional abilities. METHOD: At study entry, 95 children (62 males, 33 females) were classified using the Gross Motor Function Classification System (GMFCS) at levels I (50), II (9), III (16), IV (6), and V (14). Physical activity was recorded on a total of 159 occasions at four possible time points: 1 year 6 months to 2 years; 2 years 6 months to 3 years; 4 years; and 5 years using ActiGraph for 3 days. Mixed-effects regression models were used for analyses. RESULTS: Participants classified at GMFCS levels I and II had stable HPA as they aged. HPA significantly decreased at 5 years in children classified at GMFCS levels III to V. Sedentary time significantly increased at 4 years and 5 years in all participants. Annual HPA significantly reduced in children classified at GMFCS levels III to V (-123 counts/min, 95% confidence interval [CI] -206 to -40) while annual sedentary time significantly increased in all participants (GMFCS levels I-II: 2.4%, 95% CI 0.7-4.1; GMFCS levels III-V: 6.9%, 95% CI 4.6-9.2). INTERPRETATION: Children with CP at all GMFCS levels should be encouraged to be physically active from early childhood as HPA levels start to decline from 4 years. Breaks in sedentary time are required for all children with CP from the age of 3 years.

Habitual Physical Activity in Children With Cerebral Palsy Aged 4 to 5 Years Across All Functional Abilities.

PURPOSE: To compare ambulatory status in children with cerebral palsy aged 4 to 5 years with their habitual physical activity and time spent sedentary, and to compare their activity with physical activity guidelines. METHODS: Sixty-seven participants-independently ambulant, marginally ambulant, and nonambulant-wore accelerometers for 3 days. Time spent sedentary as a percentage of wear time and activity counts were compared between groups. RESULTS: There were significant differences in time spent sedentary and activity counts between groups. Children who were independently ambulant were more likely to meet physical activity guidelines. CONCLUSION: Children with cerebral palsy spent more than half of their waking hours in sedentary time. Interventions to reduce sedentary behavior and increase habitual physical activity are needed in children with cerebral palsy at age 4 to 5 years.

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.

Validation of Accelerometer Cut-Points in Children With Cerebral Palsy Aged 4 to 5 Years.

PURPOSE: To derive and validate triaxial accelerometer cut-points in children with cerebral palsy (CP) and compare these with previously established cut-points in children with typical development. METHODS: Eighty-four children with CP aged 4 to 5 years wore the ActiGraph during a play-based gross motor function measure assessment that was video-taped for direct observation. Receiver operating characteristic and Bland-Altman plots were used for analyses. RESULTS: The ActiGraph had good classification accuracy in Gross Motor Function Classification System (GMFCS) levels III and V and fair classification accuracy in GMFCS levels I, II, and IV. These results support the use of the previously established cut-points for sedentary time of 820 counts per minute in children with CP aged 4 to 5 years across all functional abilities. CONCLUSIONS: The cut-point provides an objective measure of sedentary and active time in children with CP. The cut-point is applicable to group data but not for individual children.

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.

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.

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.

Reported eating ability of young children with cerebral palsy: is there an association with gross motor function?

OBJECTIVE: To examine the association between parent-reported ability of young children with cerebral palsy (CP) to eat different food textures and gross motor functional abilities. DESIGN: Prospective, longitudinal, representative cohort study. SETTING: Community and tertiary pediatric hospital settings. PARTICIPANTS: Children (N=170; 110 boys [65%]) were assessed on 396 occasions (range, 1-4 occasions), including 67 at 1 year 6 months (49 boys), 99 at 2 years (66 boys), 111 at 2 years 6 months (71 boys), and 119 at 3 years (64 boys). INTERVENTIONS: Not applicable MAIN OUTCOME MEASURES: Gross motor function was determined using the Gross Motor Function Classification System (GMFCS). Parent-reported eating ability was determined using 4 items of the Pediatric Evaluation of Disability Inventory. The association between capability to eat food textures and GMFCS level was examined using generalized estimating equations. RESULTS: The distribution of GMFCS levels at initial presentation was as follows: I, n=62; II, n=32; III, n=24; IV, n=22; and V, n=30. Reported capability to eat cut-up/chunky and "all textures" of table foods decreased significantly as GMFCS level increased. A decreased capability to eat pureed/blended and ground/lumpy foods compared with GMFCS I was significantly associated with GMFCS levels IV and V only. CONCLUSIONS: Reported attainment of eating skills was closely associated with GMFCS level in young children with CP across age levels. These results emphasize the need for early oral-motor and feeding screening in young children with CP across gross motor functional abilities.

Characteristics and health service utilization of children most at risk for prolonged temporary tube feeding.

BACKGROUND: This study aimed to describe children at risk of prolonged temporary tube feeding and evaluate associations between tube feeding duration and child and health service variables. METHODS: A prospective medical hospital records audit was conducted between November 1, 2018, and November 30, 2019. Children at risk of prolonged temporary tube feeding were identified as having a tube feeding duration of >5 days. Information was collected on patient characteristics (eg, age) and service delivery provision (eg, tube exit plans). Data were collected from the pretube decision-making phase until tube removal (if applicable) or until 4 months after tube insertion. RESULTS: Descriptively, 211 at-risk children (median, 3.7 years; interquartile range [IQR], 0.4-7.7) differed from 283 not-at-risk children (median age, 0.9 years; IQR, 0.4-1.8) in terms of age, geographical location of residence, and tube exit planning. Medical diagnoses of neoplasms, congenital abnormalities, perinatal problems, and digestive system diseases in the at-risk group were individually associated with longer than average tube feeding duration, as were the primary reasons for tube feeding of nonorganic growth faltering and inadequate oral intake related to neoplasms. Yet, variables independently associated with greater odds of lengthier tube feeding durations were consultations with a dietitian, speech pathologist, or interdisciplinary feeding team. CONCLUSION: Children at risk of prolonged temporary tube feeding access interdisciplinary management because of their complexity. Identified descriptive differences between at-risk and not-at-risk children may be useful when selecting patients for tube exit planning and developing tube feeding management education programs for health professionals.

How Can We Find Out What Indigenous Children and Their Families Need to Manage Weight? Lessons from Formative Nutrition Intervention Research with First Australians.

In Australia, Indigenous children have rates of overweight and obesity 1.5 times those of non-Indigenous children. Culturally safe and effective nutrition interventions are needed for this group. This paper aims to describe a Community-based Participatory Action Research (CPAR) approach to designing formative nutrition intervention research with First Australian children and their families and to reflect on the challenges arising from this process. After obtaining ethical approvals, a Steering Committee (SC), including nine Aboriginal and Torres Strait Islander people experienced in delivering or receiving health care, was established as a project governance body to develop culturally safe project materials and methods. The Indigenous research method of yarning circles was chosen by the SC for the community consultation, and the First Australian SC members were trained to collect the data. They liaised with community organizations to recruit yarning circle participants. Individual interviews conducted by an Aboriginal research assistant replaced yarning circles due to the COVID-19 pandemic lockdowns. While the CPAR approach to formative research was successful, the pandemic and other factors tripled the study duration. To authentically, ethically and safely engage First Australians in research, researchers need to decolonize their methodological approach, and funding bodies need to allow adequate time and resources for the process.

Relationships between dietary intake and body composition according to gross motor functional ability in preschool-aged children with cerebral palsy.

BACKGROUND/AIMS: We aimed to determine the relationships between energy intake, macronutrient intake and body composition in preschool-aged children with cerebral palsy (CP) according to gross motor functional ability in comparison with typically developing children (TDC). METHODS: Seventy-three children with CP (70% male) of all functional abilities and 16 TDC (63% male) aged 2.8 ± 0.9 years participated in this study. Dietary intake was measured via a validated 3-day weighed food record. Body composition was determined via isotope dilution techniques. RESULTS: There was a significant relationship between energy intake and fat-free mass index, which was stronger in TDC compared to children with CP. There were no significant correlations between other dietary intake and body composition variables, despite differences in body composition as ambulatory status declined. Non-ambulant, tube-fed children had significantly lower protein intakes compared to orally fed children. No other differences in macronutrient intake between children with CP and TDC were apparent. CONCLUSIONS: Results suggest that relationships between dietary intake and body composition are not evident in this population, but develop over time. Physical activity levels may have a greater impact on body composition at this age. Longitudinal research is required to examine these factors.

A review of energy intake measures used in young children with cerebral palsy.

The aim of this review was to evaluate the psychometric properties and clinical utility of energy intake measures used in young children with cerebral palsy (CP). Five databases were searched for relevant literature, and measures were included if they (1) directly measured energy intake in kilojoules/kilocalories per day; (2) had published data in kilojoules/kilocalories per day for children with CP from birth to 5 years; and (3) at least 40% of participants had a diagnosis of CP. Three measures met criteria: a 3-day weighed food record, a 3-day estimated food record, and a 7-day estimated food record. Included measures were evaluated on their characteristics, intended outcome, and validity. Reliability and responsiveness were not reported for any measure. Currently there is no dietary methodology that has proven reliability or repeated validity in young children with CP. Clinicians and researchers should not rely on current methodologies until further evaluation.

A prospective, longitudinal study of growth, nutrition and sedentary behaviour in young children with cerebral palsy.

BACKGROUND: Cerebral palsy is the most common cause of physical disability in childhood, occurring in one in 500 children. It is caused by a static brain lesion in the neonatal period leading to a range of activity limitations. Oral motor and swallowing dysfunction, poor nutritional status and poor growth are reported frequently in young children with cerebral palsy and may impact detrimentally on physical and cognitive development, health care utilisation, participation and quality of life in later childhood. The impact of modifiable factors (dietary intake and physical activity) on growth, nutritional status, and body composition (taking into account motor severity) in this population is poorly understood. This study aims to investigate the relationship between a range of factors - linear growth, body composition, oral motor and feeding dysfunction, dietary intake, and time spent sedentary (adjusting for motor severity) - and health outcomes, health care utilisation, participation and quality of life in young children with cerebral palsy (from corrected age of 18 months to 5 years). DESIGN/METHODS: This prospective, longitudinal, population-based study aims to recruit a total of 240 young children with cerebral palsy born in Queensland, Australia between 1st September 2006 and 31st December 2009 (80 from each birth year). Data collection will occur at three time points for each child: 17 - 25 months corrected age, 36 +/- 1 months and 60 +/- 1 months. Outcomes to be assessed include linear growth, body weight, body composition, dietary intake, oral motor function and feeding ability, time spent sedentary, participation, medical resource use and quality of life. DISCUSSION: This protocol describes a study that will provide the first longitudinal description of the relationship between functional attainment and modifiable lifestyle factors (dietary intake and habitual time spent sedentary) and their impact on the growth, body composition and nutritional status of young children with cerebral palsy across all levels of functional ability.

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.

Quality of life and habitual physical activity in children with cerebral palsy aged 5 years: A cross-sectional study.

OBJECTIVE: To compare quality of life (QOL) according to ambulatory status and to investigate association with habitual physical activity (HPA) in children with cerebral palsy (CP) aged 5 years. METHODS: Fifty-eight participants were classified using Gross Motor Function Classification System (GMFCS) as level I = 33, II = 8, III = 6, IV = 3 and V = 8 and assessed for motor function using 66-item Gross Motor Function Measure (GMFM-66). Participants wore an ActiGraph® triaxial accelerometer for 3 days to measure HPA. Parents completed the parent proxy Cerebral Palsy Quality of Life questionnaire for Children (CP QOL-Child). Linear regression analyses were performed. RESULTS: Ambulant children with CP (GMFCS I-III) had better parent-reported QOL than non-ambulant children (GMFCS IV-V) in domains of feelings about functioning (mean difference (MD) = 20.0; 95% confidence interval (CI) = 11.7, 28.2), participation and physical health (MD = 14.5; 95%CI = 4.7, 24.4), and emotional well-being and self-esteem (MD = 12.5; 95%CI = 4.8, 20.1). HPA was not associated with QOL domains after controlling for motor function. GMFM scores accounted for 39% of variation for feelings about functioning domain (MD = 0.4; 95%CI = 0.2, 0.6). CONCLUSIONS: In children with CP aged 5 years, HPA was not associated with parent-reported QOL. Gross motor function contributed to QOL domains of feelings about functioning.

Relationship between habitual physical activity, motor capacity, and capability in children with cerebral palsy aged 4-5 years across all functional abilities.

BACKGROUND: Children with cerebral palsy (CP) have lower habitual physical activity (HPA) than their typically developing peers. There are limited studies of HPA in young children with CP under the age of 5 years. OBJECTIVE: To investigate the relationships between HPA, sedentary time, motor capacity and capability in children with CP aged 4-5 years. METHODS: Sixty-seven participants were classified using Gross Motor Function Classification System (GMFCS), assessed for motor capacity using Gross Motor Function Measure (GMFM) and wore accelerometers for three days to measure HPA and sedentary time. Motor capability was assessed using parent-reported Pediatric Evaluation of Disability Inventory (PEDI) functional skills of mobility domain. Mixed-effects regression models were used for analyses. RESULTS: GMFM was positively associated with HPA (mean difference (MD) = 19.6 counts/min; 95%CI = 16.6 to 22.7, p < 0.001) and negatively associated with sedentary time (MD = -0.6%; 95%CI = -0.7 to -0.5, p < 0.001). The PEDI was also positively associated with HPA (MD = 16.0 counts/min; 95%CI = 13.1 to 18.8, p < 0.001) and negatively associated with sedentary time (MD = -0.5%; 95%CI = -0.6 to -0.4, p < 0.001). After stratification for ambulatory status, GMFM and PEDI were associated with HPA and sedentary time in ambulant participants but not in non-ambulant participants. CONCLUSIONS: Gross motor capacity and motor capability are related to HPA and sedentary time in ambulant children with CP aged 4-5 years.

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.