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.

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.

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.

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.

A natural history of temporary tube feeding care at a children's hospital: A prospective audit of medical records.

This chart audit characterized the natural history of temporary tube feeding use at a children's hospital between 1 November 2018 and 30 November 2019. Data were collected from the decision-making phase until tube removal or 4 months post-tube insertion. Children's tube feeding journeys were described, and associations determined between patient and service-related variables and outcomes of tube feeding duration and being discharged with a feeding tube. Four hundred and 94 patients were followed with a median age of 1.0 years (IQR 3.6). Many had respiratory illnesses (n = 213, 43%) and received feeding tubes for inadequate oral intake related to acute illness (n = 279, 57%). Seventy-one new feeding tubes were inserted per month (SD 27.63). Fifty-nine per cent of patients (n = 290) received allied health consults. Although 40% of patients (n = 199) experienced complications, most patients (n = 460, 93%) ceased tube feeding within 4 months. Outcomes were associated with age, medical condition, reflux, primary reason for tube feeding, allied health consult, complication type, tube weaning plans and referral for longer-term feeding devices. Results highlighted a critical need for risk identification from the decision-making stage and standardization of practices during all phases of temporary tube feeding care.

Does patient and public involvement influence the development of competency frameworks for the health professions? A systematic review.

Competency frameworks typically describe the perceived knowledge, skills, attitudes and other characteristics required for a health professional to practice safely and effectively. Patient and public involvement in the development of competency frameworks is uncommon despite delivery of person-centered care being a defining feature of a competent health professional. This systematic review aimed to determine how patients and the public are involved in the development of competency frameworks for health professions, and whether their involvement influenced the outcome of the competency frameworks. Studies were identified from six electronic databases (MEDLINE, CINAHL, PsycINFO, EMBASE, Web of Science and ERIC). The database search yielded a total of 8,222 citations, and 43 articles were included for data extraction. Most studies were from the United Kingdom (27%) and developed through multidisciplinary collaborations involving two or more professions (40%). There was a large variation in the number of patients and members of the public recruited (range 1-1,398); recruitment sources included patients and carers with the clinical condition of interest (30%) or established consumer representative groups (22%). Common stages for involving patients and the public were in generation of competency statements (57%) or reviewing the draft competency framework (57%). Only ten studies (27%) took a collaborative approach to the engagement of patients and public in competency framework development. The main ways in which involvement influenced the competency framework were validation of health professional-derived competency statements, provision of desirable behaviors and attitudes and generation of additional competency statements. Overall, there was a lack of reporting regarding the details and outcome of patient and public involvement. Further research is required to optimize approaches to patient and public involvement in competency framework development including guidance regarding who, how, when and for what purposes they should be engaged and the requirements for reporting. Systematic review registration: https://www.crd.york.ac.uk/prospero/, identifier: CRD42020203117.

Development and preliminary validation of a brief household food insecurity screening tool for paediatric health services in Australia.

Children from food insecure households are more likely to have substandard food and nutritional intakes, and experience developmental delays, behaviour issues and increased use of health services. In Australia, screening for household food insecurity (HFI) within health services is not undertaken routinely, limiting opportunities to optimise nutrition and healthcare. This research aimed to (a) identify the prevalence, potential determinants and outcomes of HFI among paediatric outpatients in two Queensland hospitals; and (b) identify questions suitable for screening households at risk of HFI. A cross-sectional survey collected data from caregivers of children attending paediatric appointments at two hospitals in Brisbane, Australia (n = 148). Sociodemographic, health and household-related characteristics were collected, and food security status was assessed using four HFI measures. Chi-square, independent t-tests, ANOVA and logistic regression explored associations between HFI and health-related characteristics. A potential HFI screener was identified based on the most frequently endorsed questions from any HFI measure, and its validity was assessed through calculation of sensitivity and specificity. Prevalence of HFI was 41%, with 16% experiencing very low food security. Households with a child of 'fair/poor' health had 5.59 times greater odds of being food insecure than being food secure, compared to households with a child of 'excellent/good' health (aOR 5.59, 95% CI: 1.3-23.5). HFI was also positively associated with household chaos (p = .006). A combination of two questions was identified as a possible screening tool, with a sensitivity of 96% and a specificity of 90%. This study demonstrated HFI may be highly prevalent in a paediatric outpatient population, which may result in difficulties in being able to follow nutrition prescriptions. A highly sensitive and specific two-question screening tool was identified and may assist practitioners in paediatric healthcare settings in identifying clients who are at risk of HFI.

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.

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.

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.

Determinants of muscle preservation in individuals with cerebral palsy across the lifespan: a narrative review of the literature.

In individuals with cerebral palsy (CP), smaller muscle and atrophy are present at young age. Many people with CP also experience a decline in gross motor function as they age, which might be explained by the loss of muscle mass. The clinical observation of muscle wasting has prompted a comparison with sarcopenia in older adults, and the term accelerated musculoskeletal ageing is often used to describe the hallmark phenotype of CP through the lifespan. However, there has been very little research emphasis on the natural history of ageing with CP and even less with respect to the determinants or prevention of muscle loss with CP. Considering the burgeoning interest in the science of muscle preservation, this paper aims to (i) describe the characteristics of accelerated musculoskeletal ageing in people with CP, (ii) describe the pathophysiology of sarcopenia and parallels with CP, and (iii) discuss possible therapeutic approaches, based on established approaches for sarcopenia.

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.

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.

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.

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.

Nutritional Assessment and Status of Hospitalized Infants.

OBJECTIVES: Malnutrition during infancy has long-term adverse consequences for both physical and psychological development. Early detection of malnutrition among hospitalized infants is essential to provide optimal nutrition support. The primary aim of the present study was to investigate the nutritional status of hospitalized infants using 2 methods: the Subjective Global Nutritional Assessment (SGNA) and anthropometric measurement. We also investigated diagnostic category associated with nutritional status, the mean anthropometric z scores, and explored the association between malnutrition and nutrition focused variables. METHODS: Nutritional status of 110 hospitalized infants ages 31 days to 12 months was investigated using the SGNA and anthropometric measurements converted to z scores. RESULTS: Utilizing the SGNA, 78 (70.9%) infants were classified as having normal nutritional status, 30 (27.3%) were moderately malnourished, and 2 (1.8%) were severely malnourished. The proportion of infants with acute malnutrition (weight-for-length z score <-2) was 16.4%, and chronic malnutrition (length-for-age z score <-2) was 3.6%. The mean anthropometric z scores of infants were significantly lower in infants identified as moderately and severely malnourished using the SGNA. Decrease in serial weight (odds ratio [OR] 44.4; 95% confidence interval [CI]: 4.3-451.5), having prolonged gastrointestinal symptoms (OR 18.8; 95% CI: 1.5-234.7), and reduced nutrition-related functional capacity (OR 27.6; 95% CI 2.5-301.7) were associated with malnutrition after adjusting for sex, age, and length of hospital stay. CONCLUSIONS: Regardless of the method applied, cases of malnutrition amongst hospitalized infants were identified. The SGNA is a comprehensive approach to identifying malnutrition in hospitalized infants.