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Objective This study aims to explore the associated impairments of cerebral palsy (CP) and their correlates among children with CP in Vietnam.Design Descriptive cross-sectional study using hospital-based surveillance.Setting National Children’s Hospital, Hanoi, Vietnam between June and November 2017.Participants 765 children with CP were recruited.Outcome measures We assessed clinical characteristics of CP, associated impairments (epilepsy, intellectual, visual, hearing, speech impairments) and their correlates. We performed descriptive analyses (median, IQR and proportion). χ2 test and Fisher’s exact test were used for categorical variables. Univariate logistic regression and multivariate logistic regression models were established and associated impairments were included as independent variables.Results The median age of children was 1.7 years (IQR=2.7). Quadriplegia was the predominant subtype (69.5%) and 46.5% were at Gross Motor Function Classification System level IV–V. Of children, 76.3% had ≥one associated impairment, most commonly speech or intellectual impairments (59.1% and 57.8%, respectively). Severity of motor impairment, type of CP, maternal and perinatal factors (eg, gestational age, perinatal asphyxia, timing of injury causing CP) were associated with greater risk of associated impairments.Conclusion Children with CP have a high burden of associated impairments. Findings from our study will inform the development and implementation of appropriate screening and interventions and reduce the long-term adverse effects of these impairments on individuals with CP and their socioeconomic impact.

Introduction We showed in a phase II randomised controlled trial (RCT) that oral sildenafil citrate in term labour halved operative birth for fetal distress. We outline the protocol for a phase III RCT (can intrapartum SildEnafil safely Avert the Risks of Contraction-induced Hypoxia? (iSEARCH)) of 3200 women in Australia to assess if sildenafil citrate reduces adverse perinatal outcomes related to intrapartum hypoxia.Methods and analysis iSEARCH will enrol 3200 Australian women in term labour to determine whether up to three 50 mg oral doses of sildenafil citrate versus placebo reduce the relative risk of a primary composite end point of 10 perinatal outcomes potentially related to intrapartum hypoxia by 35% (from 7% to 4.55%). Secondary aims are to evaluate reductions in the relative risk of emergency caesarean section or instrumental vaginal birth for fetal distress by 25% (from 20% to 15%) and in healthcare costs. To detect a 35% reduction in the primary outcome for an alpha of 0.05 and power of 80% with 10% dropout in each arm requires 3200 women (1600 in each arm). This sample size will also yield >90% power to detect a 25% reduction for the secondary outcome of any operative birth (caesarean section or instrumental vaginal birth) for fetal distress.Ethics and dissemination Ethical approval for the iSEARCH RCT was granted by the Hunter New England Human Research Ethics Committee (ref no: 2020/ETH02791). Results will be disseminated through websites, peer-reviewed publications, scientific meetings and social media, news outlets, television and radio.Trial registration number ACTRN12621000231842.

Background: The epidemiology of cerebral palsy (CP) is poorly described in Ghana. These data are crucial for evidence-based intervention for children with CP in the country. Objectives: We aimed to describe the epidemiology of CP among children in Ghana. Method: We established the first institution-based register of children with CP in Ghana (Ghana CP Register–GCPR). Children with confirmed CP aged 18 years were registered following a detailed neurodevelopmental assessment. Socio-demographics, risk factors, predominant motor type and topography, gross motor function classification system (GMFCS), associated impairments, education and rehabilitation status were documented. Results: Between October 2018 and February 2020, 455 children were registered (mean [standard deviation {s.d.}] age at assessment: 5.9 [4.1] years). Preterm birth and low birthweight were reported in 52.0% and 21.1% children respectively. Most children (79.6%) had a pre- or perinatally acquired CP and the mean (s.d.) age of CP diagnosis was 22.2 (21.6) months. Overall, 55.9% of children had spastic tri- or quadriplegia, 60.5% had GMFCS level III–V and 70.3% had ≥ 1 associated impairment. However, 20.5% had never received rehabilitation services and 69.6% of school-aged children in the GCPR were not enrolled in schools. Conclusion: The study findings indicate a high burden of severe motor and associated impairment among children with CP in Ghana which highlights the need for tailored interventions to improve health and well-being of children with CP in the country. Contribution: The study highlights the need for interventions to improve functional outcome, health and well-being of children with CP in Ghana.

Introduction Small for gestational age (SGA) infants are at increased risk of fetal distress in labour requiring emergency operative birth (by caesarean section (CS), vacuum or forceps). We have previously shown that maternal oral sildenafil citrate (SC) in labour halves the need for operative birth for suspected fetal distress in women with appropriately grown term infants.Methods and analysis RidStress 2 is a phase III randomised, double-blinded, placebo-controlled trial of 660 women with an SGA or suboptimally grown fetus (estimated fetal weight or abdominal circumference90% power to detect a similar reduction for the secondary outcome of any operative birth (CS or instrumental vaginal birth) for fetal distress.Ethics and dissemination Ethics approval was granted by the Mater Misericordiae Limited Human Research Ethics Committee (EC00332) on 11 September 2020. We plan to disseminate the results of this randomised controlled trial through presentations at scientific meetings and peer-reviewed journals, adhering to all relevant reporting guidelines.Trial registration number RidStress 2 is registered with the Australian New Zealand Clinical Trials Registry (ACTRN12621000354886, 29/03/2021) and the Therapeutic Goods Association of Australia (date registered: 16 March 2021).

Abstract Background Delays in early social and executive function are predictive of later developmental delays and eventual neurodevelopmental diagnoses. There is limited research examining such markers in the first year of life. High-risk infant groups commonly present with a range of neurodevelopmental challenges, including social and executive function delays, and show higher rates of autism diagnoses later in life. For example, it has been estimated that up to 30% of infants diagnosed with cerebral palsy (CP) will go on to be diagnosed with autism later in life. Methods This article presents a protocol of a prospective longitudinal study. The primary aim of this study is to identify early life markers of delay in social and executive function in high-risk infants at the earliest point in time, and to explore how these markers may relate to the increased risk for social and executive delay, and risk of autism, later in life. High-risk infants will include Neonatal Intensive Care Unit (NICU) graduates, who are most commonly admitted for premature birth and/or cardiovascular problems. In addition, we will include infants with, or at risk for, CP. This prospective study will recruit 100 high-risk infants at the age of 3–12 months old and will track social and executive function across the first 2 years of their life, when infants are 3–7, 8–12, 18 and 24 months old. A multi-modal approach will be adopted by tracking the early development of social and executive function using behavioural, neurobiological, and caregiver-reported everyday functioning markers. Data will be analysed to assess the relationship between the early markers, measured from as early as 3–7 months of age, and the social and executive function as well as the autism outcomes measured at 24 months. Discussion This study has the potential to promote the earliest detection and intervention opportunities for social and executive function difficulties as well as risk for autism in NICU graduates and/or infants with, or at risk for, CP. The findings of this study will also expand our understanding of the early emergence of autism across a wider range of at-risk groups.

Objective Awareness of the need for early identification and treatment of sleep disordered breathing (SDB) in neonates is increasing but is challenging. Unrecognised SDB can have negative neurodevelopmental consequences. Our study aims to describe the clinical profile, risk factors, diagnostic modalities and interventions that can be used to manage neonates with SDB to facilitate early recognition and improved management.Methods A single-centre retrospective study of neonates referred for assessment of suspected SDB to a tertiary newborn intensive care unit in New South Wales Australia over a 2-year period. Electronic records were reviewed. Outcome measures included demographic data, clinical characteristics, comorbidities, reason for referral, polysomnography (PSG) data, interventions targeted to treat SDB and hospital outcome. Descriptive analysis was performed and reported.Results Eighty neonates were included. Increased work of breathing, or apnoea with oxygen desaturation being the most common reasons (46% and 31%, respectively) for referral. Most neonates had significant comorbidities requiring involvement of multiple specialists (mean 3.3) in management. The majority had moderate to severe SDB based on PSG parameters of very high mean apnoea-hypopnoea index (62.5/hour) with a mean obstructive apnoea index (38.7/hour). Ten per cent of patients required airway surgery. The majority of neonates (70%) were discharged home on non-invasive ventilation.Conclusion SDB is a serious problem in high-risk neonates and it is associated with significant multisystem comorbidities necessitating a multidisciplinary team approach to optimise management. This study shows that PSG is useful in neonates to diagnose and guide management of SDB.

Background: Limited knowledge on nutritional epidemiology in Ghanaian children with Cerebral Palsy (CP) necessitates a comprehensive investigation for an improved understanding of malnutrition in this population. Objectives: We aimed to describe the epidemiology of malnutrition among children with CP in Ghana. Methods: The study used data collected as part of the Ghana CP Register (GCPR). The GCPR is an institution-based surveillance of children with CP aged 18 years in Ghana. Between October 2018 and April 2020, N = 455 children with CP were registered. Data were collected on (i) weight, length or height, mid-upper-arm-circumference of children with CP; (ii) socio-demographic characteristics; (iii) motor type and topography, gross motor function classification system level (GMFCS); (iv) associated impairments; (v) educational and rehabilitation status for each child. Descriptive and bivariate analyses were performed. Results: Mean and standard deviation age of the registered children at assessment was 5.9 ± 4.1 years, and 42.1% were female. Two-thirds of the children had ≥ one form of undernutrition (underweight or severely underweight: 38.9%, stunted or severely stunted: 51.2%, thin or severely thin: 23.8%). In the adjusted analysis, low maternal education, GMFCS-IV, speech impairment and epilepsy significantly increased the odds of undernutrition among participating children (aOR: 2.6 [95% CI:1.3–5.4]; 2.2 [95% CI:1.0–4.8]; 2.0 [95% CI:1.1–3.6]; 2.9 [95% CI:1.1–7.5] respectively). Conclusions: The high malnutrition rate indicates an urgent need for nutrition interventions and translational research to improve nutritional status and prevent adverse outcomes among children with CP in Ghana. Contribution: Our study contributes important data and a framework to develop guidelines and evidence-based interventions for children with CP in Ghana.

Abstract This protocol presents a comprehensive proposal for the establishment of the Saudi Cerebral Palsy Register (SCPR), a crucial project for investigating and addressing the prevalence, etiology, and management of cerebral palsy (CP) in Saudi Arabia. The SCPR will not only provide a robust database for ongoing research and analysis but will also serve as a platform for investigating the causes of CP, implementing preventative strategies, and improving the quality of care and outcomes for people with CP and their families in Saudi Arabia. Detailed case definitions, inclusion/exclusion criteria, and data collection protocols are discussed to ensure the integrity and comparability of the data. The plan also outlines strategic funding, institutional and government endorsement, sustainability considerations, potential challenges and proposed solutions, and expected outcomes and impact. These include creating research and educational opportunities, fostering regional and international collaborations, and significantly contributing to CP prevention strategies. Overcoming anticipated obstacles, such as stigma, institutional policies, and collaborations, and securing both necessary funding and endorsements are highlighted as critical for the success of the SCPR. The project is not only aligned with promote prevention of health risks, a target of Vision 2030 in Saudi Arabia, but is also expected to have a substantial impact on the health and quality of life of people with CP and their families in Saudi Arabia, serving as inspiration for similar efforts worldwide.

Background Selective dorsal rhizotomy (SDR) is a neurosurgical procedure that reduces lower limb spasticity, performed in some children with spastic diplegic cerebral palsy. Effective pain management after SDR is essential for early rehabilitation. This study aimed to describe the anaesthetic and early pain management, pain and adverse events in children following SDR.Methods This was a retrospective cohort study. Participants were all children who underwent SDR at a single Australian tertiary hospital between 2010 and 2020. Electronic medical records of all children identified were reviewed. Data collected included demographic and clinical data (pain scores, key clinical outcomes, adverse events and side effects) and medications used during anaesthesia and postoperative recovery.Results 22 children (n=8, 36% female) had SDR. The mean (SD) age at surgery was 6 years and 6 months (1 year and 4 months). Common intraoperative medications used were remifentanil (100%), ketamine (95%), paracetamol (91%) and sevoflurane (86%). Postoperatively, all children were prescribed opioid nurse-controlled analgesia (morphine, 36%; fentanyl, 36%; and oxycodone, 18%) and concomitant ketamine infusion. Opioid doses were maximal on the day after surgery. The mean (SD) daily average pain score (Wong-Baker FACES scale) on the day after surgery was 1.4 (0.9), decreasing to 1.0 (0.5) on postoperative day 6 (POD6). Children first attended the physiotherapy gym on median day 7 (POD8, range 7–8). Most children experienced mild side effects or adverse events that were managed conservatively. Common side effects included constipation (n=19), nausea and vomiting (n=18), and pruritus (n=14). No patient required return to theatre, ICU admission or prolonged inpatient stay.Conclusions Most children achieve good pain management following SDR with opioid and ketamine infusions. Adverse events, while common, are typically mild and managed with medication or therapy. This information can be used as a baseline to improve postoperative care and to support families’ understanding of SDR before surgery.

Introduction Cerebral palsy (CP) is one of the leading causes of childhood disability globally with a high burden in low-income and middle-income countries (LMICs). Preliminary findings from the global LMIC CP Register (GLM CPR) suggest that the majority of CP in LMICs are due to potentially preventable causes. Such data are lacking in the Latin American region. Generating comparable epidemiological data on CP from this region could enable translational research and services towards early diagnosis and early intervention. We aim to establish a Latin American multicountry network and online data repository of CP called Latin American Cerebral Palsy Register (LATAM-CPR).Methods and analysis The LATAM-CPR will be modelled after the GLM CPR and will support new and emerging Latin American CP registers following a harmonised protocol adapted from the GLM CPR and piloted in Argentina (ie, Argentine Register of Cerebral Palsy). Both population-based and institution-based surveillance mechanisms will be adopted for registration of children with CP aged less than 18 years to the participating CP registers. The data collection form of the LATAM-CPR will include risk factors, clinical profile, rehabilitation, socioeconomical status of children with CP. Descriptive data on the epidemiology of CP from each participating country will be reported, country-specific and regional data will be compared.Ethics and dissemination Individual CP registers have applied ethics approval from respective national human research ethics committees (HREC) and/or institutional review boards prior to the establishment and inclusion into the LATAM-CPR. Ethical approval for LATAM-CPR has already been obtained from the HREC in the two countries that started (Argentina and Mexico). Findings will be disseminated and will be made publicly available through peer-reviewed publications, conference presentations and social media communications.

Background Mask leak and airway obstruction are common with mask ventilation in newborn infants, leading to suboptimal ventilation. We aimed to perform a pilot study measuring respiratory mechanics during one-person and two-person mask ventilation in preterm infants at birth.Methods Infants less than 30 weeks’ gestation were eligible for the study. In the two-person method, one person holds the mask in place and the other provides positive pressure ventilation compared with the standard one-person mask hold. A respiratory function monitor was used in line with a T-piece resuscitator to measure mask leak and airway obstruction. Deferred consent was obtained.Results Twenty-five infants were recruited. The mean (SD) birth weight was 920.4 g (188.3), and mean (SD) gestational age was 27.3 weeks (3.0). Percentage mask leak was higher in the one-person mask method (26.4±18.5) compared with the two-person mask method (17.6±9.3) (p=0.018). The mean (SD) expired tidal volume (VTe, mL) in breaths with leak was 3.9 (1.57) in the one-person method compared with 3.05 (1.0) the two-person method (p=0.31). A significantly lower mean (SD) end-tidal carbon dioxide (EtCO2, mm Hg) was measured at 25.3 (9.9) in breaths with mask leak, compared with 30.8 (12.1) in breaths without leak. The breaths with airway obstruction had lower mean EtCO2 (25.9 vs 30.8, p=0.003) and lower mean VTe (1.71 vs 6.95, p

IntroductionAssessment of bowel health in ill preterm infants is essential to prevent and diagnose early potentially life-threatening intestinal conditions such as necrotizing enterocolitis. Auscultation of bowel sounds helps assess peristalsis and is an essential component of this assessment.AimWe aim to compare conventional bowel sound auscultation using acoustic recordings from an electronic stethoscope to real-time bowel motility visualized on point-of-care bowel ultrasound (US) in neonates with no known bowel disease.MethodsThis is a prospective observational cohort study in neonates on full enteral feeds with no known bowel disease. A 3M™ Littmann® Model 3200 electronic stethoscope was used to obtain a continuous 60-s recording of bowel sounds at a set region over the abdomen, with a concurrent recording of US using a 12l high-frequency Linear probe. The bowel sounds heard by the first investigator using the stethoscope were contemporaneously transferred for a computerized assessment of their electronic waveforms. The second investigator, blinded to the auscultation findings, obtained bowel US images using a 12l Linear US probe. All recordings were analyzed for bowel peristalsis (duration in seconds) by each of the two methods.ResultsWe recruited 30 neonates (gestational age range 27–43 weeks) on full enteral feeds with no known bowel disease. The detection of bowel peristalsis (duration in seconds) by both methods (acoustic and US) was reported as a percentage of the total recording time for each participant. Comparing the time segments of bowel sound detection by digital stethoscope recording to that of the visual detection of bowel movements in US revealed a median time of peristalsis with US of 58%, compared to 88.3% with acoustic assessment (p

Introduction Despite growing awareness of neurodevelopmental impairments in children with congenital heart disease (CHD), there is a lack of large, longitudinal, population-based cohorts. Little is known about the contemporary neurodevelopmental profile and the emergence of specific impairments in children with CHD entering school. The performance of standardised screening tools to predict neurodevelopmental outcomes at school age in this high-risk population remains poorly understood. The NITric oxide during cardiopulmonary bypass to improve Recovery in Infants with Congenital heart defects (NITRIC) trial randomised 1371 children

Introduction Antenatal maternal magnesium sulfate (MgSO4) administration is a proven efficacious neuroprotective treatment reducing the risk of cerebral palsy (CP) among infants born preterm. Identification of the neuroprotective component with target plasma concentrations could lead to neonatal treatment with greater efficacy and accessibility.Methods and analysis This is a prospective observational cohort study, in three tertiary Australian centres. Participants are preterm infants, irrespective of antenatal MgSO4 exposure, born in 2013–2020 at 24+0 to 31+6 weeks gestation, and followed up to 2 years corrected age (CA) (to September 2023). 1595 participants are required (allowing for 17% deaths/loss to follow-up) to detect a clinically significant reduction (30% relative risk reduction) in CP when sulfate concentration at 7 days of age is 1 SD above the mean.A blood sample is collected on day 7 of age for plasma sulfate and magnesium measurement. In a subset of participants multiple blood and urine samples are collected for pharmacokinetic studies, between days 1–28, and in a further subset mother/infant blood is screened for genetic variants of sulfate transporter genes.The primary outcome is CP. Surviving infants are assessed for high risk of CP at 12–14 weeks CA according to Prechtl’s Method to assess General Movements. Follow-up at 2 years CA includes assessments for CP, cognitive, language and motor development, and social/behavioural difficulties.Multivariate analyses will examine the association between day 7 plasma sulfate/magnesium concentrations with adverse neurodevelopmental outcomes. A population pharmacokinetic model for sulfate in the preterm infant will be created using non-linear mixed-effects modelling.Ethics and dissemination The study has been approved by Mater Misericordiae Ltd Human Research Ethics Committee (HREC/14/MHS/188). Results will be disseminated in peer-reviewed journal publications, and provided to the funding bodies. Using consumer input, a summary will be prepared for participants and consumer groups.

This review describes the sonographic appearances of the neonatal bowel in Necrotising enterocolitis. It compares these findings to those seen in midgut-Volvulus, obstructive intestinal conditions such as milk-curd obstruction, and slow gut motility in preterm infants on continuous positive airway pressure (CPAP)-CPAP belly syndrome. Point-of-care bowel ultrasound is also helpful in ruling out severe and active intestinal conditions, reassuring clinicians when the diagnosis is unclear in a non-specific clinical presentation where NEC cannot be excluded. As NEC is a severe disease, it is often over-diagnosed, mainly due to a lack of reliable biomarkers and clinical presentation similar to sepsis in neonates. Thus, the assessment of the bowel in real-time would allow clinicians to determine the timing of re-initiation of feeds and would also be reassuring based on specific typical bowel characteristics visualised on the ultrasound.

Introduction Cerebral palsy (CP) is the most common physical disability of childhood worldwide. Historically the diagnosis was made between 12 and 24 months, meaning data about effective early interventions to improve motor outcomes are scant. In high-income countries, two in three children will walk. This evaluator-blinded randomised controlled trial will investigate the efficacy of an early and sustained Goals–Activity–Motor Enrichment approach to improve motor and cognitive skills in infants with suspected or confirmed CP.Methods and analysis Participants will be recruited from neonatal intensive care units and the community in Australia across four states. To be eligible for inclusion infants will be aged 3–6.5 months corrected for prematurity and have a diagnosis of CP or ‘high risk of CP’ according to the International Clinical Practice Guideline criteria. Eligible participants whose caregivers consent will be randomly allocated to receive usual care or weekly sessions at home from a GAME-trained study physiotherapist or occupational therapist, paired with a daily home programme, until age 2. The study requires 150 participants per group to detect a 0.5 SD difference in motor skills at 2 years of age, measured by the Peabody Developmental Motor Scales-2. Secondary outcomes include gross motor function, cognition, functional independence, social–emotional development and quality of life. A within-trial economic evaluation is also planned.Ethics and dissemination Ethical approval was obtained from the Sydney Children’s Hospital Network Human Ethics Committee in April 2017 (ref number HREC/17/SCHN/37). Outcomes will be disseminated through peer-reviewed journal publications, presentations at international conferences and consumer websites.Trial registration number ACTRN12617000006347.

(1) Background: Data on immediate causes of malnutrition among children with Cerebral Palsy (CP) are limited in low- and middle-income countries (LMICs). We aimed to assess the dietary intake pattern, feeding characteristics, and nutritional status of children with CP in Bangladesh; (2) Methods: We conducted a descriptive observational study in Shahjadpur, Bangladesh. Children with CP registered into the Bangladesh CP Register were included. Socio-demographic, clinical, dietary intake, feeding, gastro-intestinal conditions, and anthropometric data were collected. Descriptive and inferential statistics were reported; (3) Results: 75 children (mean (SD) age 3.6 (2.7) years, 42.7% female) and their caregivers participated. Overall, 53.6% and 46.4% of children were underweight and stunted, respectively. Two-thirds children consumed ≤4 out of 8 food groups. Meat, poultry, and fish; dairy products; and sugar consumption was lower among underweight children (43.4%, 48.8%, 25.0%) than others (56.7%, 51.2% 75.0%). Inappropriate feeding position was observed in 39.2% of children. Meal duration was >30 min/meal for 21.7‒28.0% children. Among all, 12.0% had feeding difficulties, 88.0% had ≥1 gastro-intestinal conditions; (4) Conclusions: The study reports preliminary data on the feeding characteristics, dietary intake, and nutritional status of children with CP in rural Bangladesh. The findings are crucial for cost-effective interventions, prevention, and management of malnutrition among children with CP in Bangladesh and other LMICs.

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.

IntroductionIn neonatal resuscitation, T-piece resuscitator (TPR) are used widely, but the evidence is limited for their use in infants born at term gestation. The aim of this study was to compare the delivered positive end expiratory pressure (PEEP) and respiratory system resistance (Rrs) using TPR and self-inflating bag (SIB) in a cadaveric piglet model.MethodsCadaveric newborn piglets were tracheotomised, intubated (cuffed tube) and leak tested. Static lung compliance was measured. Positive pressure ventilation was applied by TPR and SIB in a randomized sequence with varying, inflations per minute (40, 60 and 80 min) and peak inspiratory pressures (18 and 30 cmH2O). PEEP was constant at 5 cmH2O. The lungs were washed with saline and static lung compliance was re-measured; ventilation sequences were repeated. Lung inflation data for the respiratory mechanics were measured using a respiratory function monitor and digitally recorded for both pre and post-lung wash inflation sequences. A paired sample t-test was used to compare the mean and standard deviation.ResultsThe mean difference in PEEP (TPR vs. SIB) was statistically significant at higher inflation rates of 60 and 80 bpm. At normal lung compliance, mean difference was 1.231 (p = 0.000) and 2.099 (p = 0.000) with PIP of 18 and 30 cmH2O respectively. Significantly higher Rrs were observed when using a TPR with higher inflation rates of 60 and 80 bpm at varying lung compliance.ConclusionTPR is associated with significantly higher PEEP in a compliant lung model, which is probably related to the resistance of the TPR circuit. The effect of inadvertent PEEP on lung mechanics and hemodynamics need to be examined in humans. Further studies are needed to assess devices used to provide PEEP (TPR, SIB with PEEP valve, Anaesthetic bag with flow valve) during resuscitation of the newborn.

Objective Neonatal encephalopathy remains a major cause of infant mortality and neurodevelopmental impairment. Infection may exacerbate brain injury and mitigate the effect of therapeutic hypothermia (TH). Additionally, infants with sepsis treated with TH may be at increased risk of adverse effects. This study aimed to review the clinical characteristics and outcomes for infants with sepsis treated with TH.Design and setting Retrospective cohort study of infants treated with TH within Australia and New Zealand.Patients 1522 infants treated with TH, including 38 with culture-positive sepsis from 2014 to 2018.Intervention Anonymised retrospective review of data from Australian and New Zealand Neonatal Network. Infants with culture-positive sepsis within 48 hours were compared with those without sepsis.Main outcome measures Key outcomes include in-hospital mortality, intensive care support requirements and length of stay.Results Overall the rate of mortality was similar between the groups (13% vs 13%). Infants with sepsis received a higher rate of mechanical ventilation (89% vs 70%, p=0.01), high-frequency oscillatory ventilation (32% vs 13%, p=0.003) and inhaled nitric oxide for persistent pulmonary hypertension (38% vs 16%, p

Objective To determine the effect of continuous wound infusion of local anaesthetic drug (bupivacaine) on total amount of systemic opioid use in the first 72 hours in newborn infants undergoing laparotomy.Design A two-arm parallel, open-label randomised controlled trial.Setting A quaternary newborn intensive care unit.Patients Infants>37 weeks of gestation undergoing laparotomy for congenital or acquired abdominal conditions.Interventions Continuous wound infusion of local anaesthetic (bupivacaine) for the first 72 hours along with systemic opioid analgesia (catheter group) or only systemic opioid analgesia (opioid group).Main outcome Total amount of systemic opioid used within the first 72 hours post laparotomy.Results The study was underpowered as only 30 of the expected sample size of 70 infants were enrolled. 16 were randomised to catheter group and 14 to opioid group. The two groups were similar at baseline. There was no significant difference between the groups for the primary outcome of median total systemic opioid use in the first 72 hours post laparotomy (catheter 431.5 µg/kg vs opioid 771 µg/kg, difference −339.5 µg/kg, 90% CIhigh 109, p value 0.28). There was no significant difference between the groups for any of the secondary outcomes including pain scores, duration of mechanical ventilation, time to reach full feeds and duration of hospital stay. There were no adverse events noted.Conclusion Continuous wound infusion of local anaesthetic along with systemic opioid analgesia is feasible. The lack of a difference in total systemic opioid use in the first 72 hours cannot be reliably interpreted as the study was underpowered.Trial registration number ACTRN12610000633088.

Despite the importance of knowing the cognitive capabilities of children with neurodevelopmental conditions, less than one-third of children with cerebral palsy participate in standardized assessments. Globally, approximately 50% of people with cerebral palsy have an intellectual disability and there is significant risk for domain-specific cognitive impairments for the majority of people with cerebral palsy. However, standardized cognitive assessment tools are not accessible to many children with cerebral palsy, as they require manual manipulation of objects, verbal response and/or speeded response. As such, standardised assessment may result in an underestimation of abilities for children with significant motor and/or speech impairment. The overall aim of the project is to examine and compare the psychometric properties of standardised cognitive assessment tools that have been accommodated for use with either a switch device or eye-gaze control technologies, with the specific aims to: (1) Examine the psychometric properties (measurement agreement and validity) of accommodated assessment tools by comparing the performance of typically developing children on six cognitive assessment tools administered via standardised versus accommodated (switch or eye-gaze control) administration; (2) Describe and compare the performance and user experience of children with cerebral palsy on six accommodated cognitive assessments administered via switch or eye-gaze control technologies. Secondary aims are to: (1) Describe the completion rates and time to complete assessments of participants in each group; (2) Within the group with cerebral palsy, examine the effects of condition-specific characteristics (type of cerebral palsy, functional levels, and pain) and demographics (age, socio-demographic) on participation. This protocol paper describes a two-phase validation and acceptability study that utilizes a mixed-model design. This study will collect concurrent data from 80 typically developing children and 40 children with cerebral palsy, who use switch or eye-gaze control technology as alternate access communication methods. The set of instruments will measure receptive vocabulary, fluid reasoning, sustained attention, vision perception, visuospatial working memory and executive functions. Data analyses will be conducted using SPSS v. 25 and R v 4.1.0. SPSS Sample Power 3 was used for power computation and allows for a 10% drop out rate. Quantitative descriptive statistics, measurement agreement data plotting, bivariate and multiple regressions analysis will be conducted using appropriate methods.

Abstract Background Inborn errors of metabolism (IEM) are a diverse group of genetic disorders that can result in significant morbidity and sometimes death. Metabolic management can be challenging and burdensome for families. Liver transplantation (LT) is increasingly being considered a treatment option for some IEMs. IEMs are now considered the second most common reason for pediatric LT. Aim To review the data of all children with an IEM who had LT at The Children's Hospital at Westmead (CHW), NSW, Australia between January 1986 and January 2019. Methods Retrospective data collected from the medical records and genetic files included patient demographics, family history, parental consanguinity, method of diagnosis of IEM, hospital and intensive care unit admissions, age at LT, graft type, clinical outcomes and metabolic management pre and post‐LT. Results Twenty‐four LT were performed for 21 patients. IEM diagnoses were MSUD (n = 4), UCD (n = 8), OA (n = 6), TYR type I (n = 2) and GSD Ia (n = 1). Three patients had repeat transplants due to complications. Median age at transplant was 6.21 years (MSUD), 0.87 years (UCD), 1.64 years (OA) and 2.2 years (TYR I). Two patients died peri‐operatively early in the series, one died 3 months after successful LT due to septicemia. Eighteen LTs have been performed since 2008 in comparison to six LT prior to 2008. Dietary management was liberalized post LT for all patients. Conclusions Referral for LT for IEMs has increased over the last 33 years, with the most referrals in the last 10 years. Early LT has resulted in improved clinical outcomes and patient survival.

Objective To define the prevalence and seizure subtypes among children with cerebral palsy (CP) in rural Bangladesh and explore barriers to optimum epilepsy control.Design Prospective cohort study.Setting The study was conducted in Shahjadpur, a rural subdistrict of Bangladesh.Participants Children (

Abstract Background The health-related quality of life (HRQoL) of adolescents with CP in low and middle-income countries is often poor, as is the case in Bangladesh. This exploratory study examined what factors predict the proxy-reported HRQoL of adolescents with CP in rural Bangladesh, a typical low- and middle-income country (LMIC). Methods Adolescents with CP (10 to 18y) were identified using the Bangladesh Cerebral Palsy Register. HRQoL was assessed using the Cerebral Palsy Quality of Life-Teens proxy-report questionnaire (CPQoL-Teens), adolescent mental health using the Strengths and Difficulty Questionnaire (SDQ) and caregiver mental health using the Depression, Anxiety and Stress Scale (DASS-21). Theoretical and statistical interests (i.e. bivariate analysis, p

Abstract Infant regurgitation is common during infancy and can cause substantial parental distress. Regurgitation can lead to parental perception that their infant is in pain. Parents often present in general practitioner surgeries, community baby clinics and accident and emergency departments which can lead to financial burden on parents and the health care system. Probiotics are increasingly reported to have therapeutic effects for preventing and treating infant regurgitation. The objective of this systematic review and meta‐analysis was to evaluate the efficacy of probiotic supplementation for the prevention and treatment of infant regurgitation. Literature searches were conducted using MEDLINE, CINAHL, and the Cochrane Central Register of Controlled trials. Only randomised controlled trials (RCTs) were included. A meta‐analysis was performed using the Cochrane Collaboration methodology where possible. Six RCTs examined the prevention or treatment with probiotics on infant regurgitation. A meta‐analysis of three studies showed a statistically significant reduction in regurgitation episodes for the probiotic group compared to the placebo group (mean difference [MD]: −1.79 episodes/day: 95% confidence interval [CI]: −3.30 to −0.27, N = 560), but there was high heterogeneity (96%). Meta‐analysis of two studies found a statistically significant increased number of stools per day in the probiotic group compared to the placebo group at 1 month of age (MD: 1.36, 95% CI: 0.99 to 1.73, N = 488), with moderate heterogeneity (69%). Meta‐analysis of two studies showed no statistical difference in body weight between the two groups (MD: −91.88 g, 95% CI: 258.40–74.63: I2 = 23%, N = 112) with minimal heterogeneity 23%. Probiotic therapy appears promising for infant regurgitation with some evidence of benefit, but most studies are small and there was relatively high heterogeneity. The use of probiotics could potentially be a noninvasive, safe, cost effective, and preventative positive health strategy for both women and their babies. Further robust, well controlled RCTs examining the effect of probiotics for infant regurgitation are warranted.

Abstract Background Children with neurodevelopmental disorders share common phenotypes, support needs and comorbidities. Such overlap suggests the value of transdiagnostic assessment pathways that contribute to knowledge about research and clinical needs of these children and their families. Despite this, large transdiagnostic data collection networks for neurodevelopmental disorders are not well developed. This paper describes the development of a nationally supported transdiagnostic clinical and research assessment protocol across Australia. The vision is to establish a harmonised network for data collection and collaboration that promotes transdiagnostic clinical practice and research. Methods Clinicians, researchers and community groups across Australia were consulted using surveys and national summits to identify assessment instruments and unmet needs. A national research committee was formed and, using a consensus approach, selected assessment instruments according to pre‐determined criteria to form a harmonised transdiagnostic assessment protocol. Results Identified assessment instruments were clustered into domains of transdiagnostic assessment needs, which included child functioning/quality of life, child mental health, caregiver mental health, and family background information. From this, the research committee identified a core set of nine measures and an extended set of 14 measures that capture these domains with potential for further modifications as recommended by clinicians, researchers and community members. Conclusion The protocol proposed here was established through a strong partnership between clinicians, researchers and the community. It will enable (i) consensus driven transdiagnostic clinical assessments for children with neurodevelopmental disorders, and (ii) research studies that will inform large transdiagnostic datasets across neurodevelopmental disorders and that can be used to inform research and policy beyond narrow diagnostic groups. The long‐term vision is to use this framework to facilitate collaboration across clinics to enable large‐scale data collection and research. Ultimately, the transdiagnostic assessment data can be used to inform practice and improve the lives of children with neurodevelopmental disorders and their families.

Objective To determine the practices of neonatologists in managing high-risk neonates believed to be at risk of sleep disordered breathing (SDB).Design An electronic web-based questionnaire assessing awareness of and current practices for managing neonates predisposed to SDB with conditions like craniofacial anomalies, neuromuscular disorders or airway problems was emailed to 232 neonatologists and neonatal fellows working in Australia and New Zealand (NZ). Additionally, neonatologists were approached directly during the annual Australia and NZ perinatal conference in 2019.Results 93 neonatologists (40%) responded to the survey. The majority (85%) of the respondents stated that there were no written protocols/criteria for sleep consultation in their unit. We found considerable variations in the threshold for performing tests including oximetry or referring for polysomnography. Most respondents would perform oximetry before referring for a sleep consultation. However, the duration of oximetry varied from 6 to 24 hours and there was no consensus about what is considered abnormal on an oximetry study.Conclusion Management of SDB is gaining importance in neonatal care because of prolonged length of hospital stay and possible long-term effects of SDB. Responses received suggest a lack of clarity regarding thresholds for referral for treatment of SDB. Likely contributory factors are concerns regarding a lack of long-term outcome data from treatment perceived to be onerous for the family, unsettling to some infants and delaying hospital discharge. To overcome inconsistencies in practice, standardised guidelines for assessing and managing SDB in neonates are needed.

Cardiac rhabdomyomas in neonates may cause significant cardiac risk. Recently, sirolimus has been used to treat these lesions. The dose, duration, and monitoring for therapy are unknown. A case of sirolimus use in a premature neonate is presented. No significant adverse effects were seen. Review of published cases is included. (Level of Difficulty: Advanced.)

Abstract Background Hip dysplasia is common among children with cerebral palsy (CP), particularly in spastic CP. It can result in pain, reduced function and quality of life. However, the burden of hip dysplasia among children with CP in llow-and middle-income countries (LMICs) like Bangladesh is unknown. We aimed to define the burden of hip dysplasia among children with spastic CP in Bangladesh. Methods This study includes a subset of the Bangladesh CP Register (BCPR) study cohort who were registered between January and March 2015. The BCPR is a population-based surveillance of children with CP (aged

Abstract Background Quality of life (QoL) and health-related quality of life (HRQoL) measurement in low and middle-income countries of people with cerebral palsy (CP), the major cause of childhood physical disability, is essential to assess the impact of interventions and inform policies that best improve people’s lives. The purpose of this study was to cross-culturally translate and psychometrically validate the Cerebral Palsy Quality of Life-Teens (CPQoL-Teens) self- and proxy-report questionnaires for application with adolescents with CP in Bangladesh. Method The CPQoL-Teens questionnaires were translated to Bengali using forward and backwards cross-cultural translation protocols. The questionnaires were interviewer administered to adolescents and their primary caregivers, identified through the Bangladesh Cerebral Palsy Register. Feasibility, sensitivity, internal consistency, content, concurrent and construct validity were assessed. Results One hundred fifty four adolescents with CP (10 to 18y; mean 15y 1mo SD 1y 8mo; 31.2% female) participated. Feasibility, sensitivity and internal consistency of both self- and proxy-report questionnaires was excellent; nil missing scores except ‘school wellbeing’ which was associated with non-school attendance (48.4 to 74.7%); floor and ceiling effect ≤13.6%; Cronbach’s alpha 0.77 to 0.94. Instrument validity was good; confirmatory factor analysis reflected five of the seven original instrument dimensions. CPQoL-Teens correlated to Kidscreen-27 on most dimensions (r = 0.176 to 0.693, p

Abstract Background Measuring the health-related quality of life (HRQoL) of adolescents, including those with cerebral palsy (CP) (the major cause of childhood physical disability worldwide) in Bangladesh is pertinent although there is a dearth of validated instruments for assessing this concept. For application in a case-control study comparing HRQoL between adolescents with CP and peers without disability in Bangladesh (a typical low- and middle-income country) we cross-culturally translated and psychometrically tested KIDSCREEN-27. Methods KIDSCREEN-27 was translated to Bengali using forward and backwards translation protocol and interviewer administered to adolescents with CP and their age and sex matched peers without disability. Primary caregivers were included for proxy-report. Sociodeomgraphic characterists and clinical information were extracted from the Bangladesh Cerebral Palsy Register (BCPR) and adolescent mental health was assessed using the Bengali version Strenghts and Difficulties Questionnaire (SDQ). Feasibility, floor and ceiling effect, internal consistency, content and construct validity of KIDSCREEN-27 were tested. Results Feasibility, floor and ceiling effect and internal consistency of KIDSCREEN-27 was good for both self- and proxy-report questionnaires; nil missing scores except ‘school environment’ (11.0% to 74.7%) which correlated to rates of non-school attendance; floor and ceiling effect ≤10.4% except ‘peers and social support’ 23.4%; Cronbach’s alpha 0.67 to 0.91. Instrument validity was strong; factor analysis reflected original instrument dimensions within one to three factors and difference in known groups was observed by CP and adolescent mental health (p

Abstract Background Children with complex neurodevelopmental disabilities such as cerebral palsy (CP), have a higher risk of dental disease related at least in part to greater difficulties in performing and maintaining effective oral hygiene and oral care practices. However, to date, there are very few studies that have considered the impact of dental disease on the Oral Health-Related Quality of Life (OHRQoL) of children and adolescents with cerebral palsy. This study aimed to investigate the association between dental caries experience and oral health related quality of life (OHRQoL) among children and adolescents with cerebral palsy in a low-resource setting (Bangladesh). Methods A total of 90 children and adolescents with CP, 2–17 years old (median age 10 years; 37.8% female and 62.2% male) were randomly selected from the Bangladesh Cerebral Palsy Register (BCPR) The decayed, missing and filled teeth (dmft/DMFT) index was used to measure caries experience. Child Perceptions Questionnaire (CPQ) and Family Impact Scale (FIS) were used to assess oral health–related quality of life (OHRQoL). Binary logistic regression was used to investigate factors that may contribute to dental caries experience. Results Dental caries were observed among 55.6% of the participants. After adjusting for age and gender, binary logistic regression analysis showed that dental caries experience was significantly associated with those who had teeth/mouth pain (rate ratio 7.3; P = 0.02), food caught between teeth (rate ratio: 6.4; P = 0.02), difficulty in eating and drinking (rate ratio 5.9; p = 0.02) and those who felt frequently upset (rate ratio: 54.7; P = 0.02). Conclusion In this study, we found that children and adolescents with CP in a low-resource setting had high dental caries experience and that dental caries had a negative impact on OHRQoL amongst these participants and their parents/caregivers. Health care professionals should be aware of the importance of dental health and oral hygiene in this population. These findings highlight the need for oral health promotion programs for children and adolescents with CP in these settings to reduce pain and to improve quality of life.

Background: Studies on cerebral palsy among children and adolescents in Arabic-speaking countries are scarce. In this systematic review, we aimed to describe the epidemiology of cerebral palsy among children and adolescents in Arabic-speaking countries in terms of prevalence, risk factors, motor types, and rehabilitation. Methods: Six key bibliographic databases were searched for relevant literature published to 17 July 2021. Titles and abstracts were screened for potential inclusion and two independent reviewers screened the full texts of potential articles following pre-defined inclusion/exclusion criteria. The included studies were evaluated independently by three reviewers. The risk of bias was assessed, and data were extracted and analysed. Results: A total of 32 studies from 7 countries met our inclusion criteria. The prevalence of cerebral palsy in Arabic-speaking countries was 1.8/1000 live births (95% CI: 1.2–2.5). Spastic cerebral palsy was the most common motor type, representing 59.8% (95% CI: 46.2–72.7) of pooled estimates. This included children with spastic quadriplegia, diplegia, and hemiplegia; 25.1% (95% CI: 18.2–32.8), 16.2% (95% CI: 11.4–23.3), and 10.4% (95% CI: 7.3–13.8), respectively. Consanguinity was high and represented 37.7% (95% CI: 29.3–46.6). Only one included study reported the types of rehabilitation received (e.g., physiotherapy and assistance devices). Conclusions: This paper provides a summary of the epidemiology of cerebral palsy in Arabic-speaking countries and highlights areas for future research. There is still a substantial knowledge gap on the epidemiology of cerebral palsy in these regions. Countries in the Arab region should follow examples of countries that have successfully established cerebral palsy registries to generate evidence on epidemiology of cerebral palsy and opportunities for prevention.

ObjectiveThe objective of this study was to assess the rehabilitation status and factors associated with rehabilitation service utilisation among children with cerebral palsy (CP) in Bangladesh.Materials and methodsThis is a population-based surveillance study conducted among children with CP registered in the Bangladesh CP Register (BCPR), the first population-based register of children with CP aged ResultsBetween January 2015 and December 2019, 2852 children with CP were registered in the BCPR (mean (standard deviation, SD) age: 7 y 8 months (mo) (4 y 7 mo), 38.5% female). Of these, 50.2% had received rehabilitation services; physiotherapy was the most common type of service (90.0%). The mean (SD) age at commencement of rehabilitation services was 3 y 10 mo (3 y 1 mo). The odds of not receiving rehabilitation was significantly higher among female children (adjusted odds ratio (aOR) 1.3 [95% CI: 1.0-1.7], children whose mothers were illiterate and primary level completed (aOR 2.1 [95% CI: 1.4-3.1] and aOR 1.5 [95% CI: 1.1-2.1], respectively), fathers were illiterate (aOR 1.9 [95% CI: 1.3-2.8]), had a monthly family income ~US$ 59-118 (aOR: 1.8 [95% CI: 1.2-2.6]), had hearing impairment (aOR: 2.3 [95% CI: 1.5-3.5]) and motor severity (i.e. Gross Motor Function Classification System level III (aOR: 0.6 [95% CI: 0.3-0.9]) and level V (aOR: 0.4 [95% CI: 0.2-0.7])).ConclusionsRehabilitation status was poor among the majority of the children with CP in the BCPR cohort, limiting their opportunities for functional improvement. A community-based rehabilitation model focusing on socio-demographic and clinical characteristics should be a public health priority in Bangladesh.

Introduction Poverty is a key contributor to delayed diagnosis and limited access to early intervention and rehabilitation for children with cerebral palsy (CP) in rural Bangladesh. 97% of families of children with CP live below the poverty line in Bangladesh. Therefore, in low-and middle-income countries (LMICs), efforts to improve outcomes for children with CP (including health-related quality of life, motor function, communication, and nutritional attainments) should also include measures to improve family economic and social capital. We propose a randomised controlled trial (RCT) to evaluate the effectiveness of an integrated microfinance/livelihood and community-based rehabilitation (IMCBR) program for ultra-poor families of children with CP in rural Bangladesh. Material and methods This will be a cluster RCT comparing three arms: (a) integrated microfinance/livelihood and community-based rehabilitation (IMCBR); (b) community-based rehabilitation (CBR) alone; and (c) care-as-usual (i.e. no intervention). Seven clusters will be recruited within each arm. Each cluster will consist of 10 child-caregiver dyads totalling 21 clusters with 210 dyads. Parents recruited in the IMCBR arm will take part in a microfinance/livelihood program and Parent Training Module (PTM), their children with CP will take part in a Goal Directed Training (GDT) program. The programs will be facilitated by specially trained Community Rehabilitation Officers. The CBR arm includes the same PTM and GDT interventions excluding the microfinance/livelihood program. The care-as-usual arm will be provided with information about early intervention and rehabilitation. The assessors will be blinded to group allocation. The duration of the intervention will be 12 months; outcomes will be measured at baseline, 6 months, 12 months, and 18 months. Conclusion This will be the first RCT of an integrated microfinance/livelihood and CBR program for children with CP in LMIC settings. Evidence from the study could transform approaches to improving wellbeing of children with CP and their ultra-poor families.

Cerebral palsy describes a group of permanent disorders of movement, motor function and posture that occur due to non-progressive insults to the developing brain. Most of the information concerning the early diagnosis of cerebral palsy originates from studies conducted in high-income countries. In this scoping review, we aimed to explore the tools used in low- and middle-income countries for the early diagnosis of cerebral palsy. A systematic search was conducted using OVID Medline and PubMed databases. “Early diagnosis” was defined as diagnosis prior to 12 months of age, and low- and middle-income countries were classified according to the World Bank classification system. We identified nine studies on the early diagnosis of cerebral palsy from low- and middle-income countries. The tools featured (n = number of studies) were: General Movement Assessment (6), neonatal magnetic resonance imaging (3), Hammersmith Neonatal Neurological Examination (2), Hammersmith Infant Neurological Examination (1) and cranial ultrasound (1). We found a paucity of published literature on the early diagnosis of cerebral palsy from low- and middle-income countries. Further research is needed to determine the tools that are accurate and feasible for use in low-resource settings, particularly since cerebral palsy is more prevalent in these areas.

Background: Malnutrition is substantially higher among children with cerebral palsy (CP) in low- and middle-income countries (LMICs) when compared with the general population. Access to appropriate interventions is crucial for better management of malnutrition and nutritional outcomes of those children. We aimed to review the existing evidence on nutrition interventions for children with CP in LMICs. Methods: Online databases, i.e., PubMed and Scopus, and Google Scholar were searched up to 10 January 2022, to identify peer-reviewed publications/evidence on LMIC focused nutritional management guidelines/interventions. Following title screening and abstract review, full articles that met the inclusion/exclusion criteria were retained for data charting. Information about the study characteristics, nutrition interventions, and their effectiveness were extracted. Descriptive data were reported. Results: Eight articles published between 2008 and 2019 were included with data from a total of n = 252 children with CP (age range: 1 y 0 m–18 y 7 m, 42% female). Five studies followed experimental design; n = 6 were conducted in hospital/clinic/center-based settings. Four studies focused on parental/caregiver training; n = 2 studies had surgical interventions (i.e., gastrostomy) and n = 1 provided neurodevelopmental therapy feeding intervention. Dietary modification as an intervention (or component) was reported in n = 5 studies and had better effect on the nutritional outcomes of children with CP compared to interventions focused on feeding skills or other behavioral modifications. Surgical interventions improved nutritional outcomes in both studies; however, none documented any adverse consequences of the surgical interventions. Conclusion: There is a substantial knowledge gap on nutrition interventions for children with CP in LMICs. This hinders the development of best practice guidelines for the nutritional management of children with CP in those settings. Findings suggest interventions directly related to growth/feeding of children had a better outcome than behavioral interventions. This should be considered in planning of nutrition-focused intervention or comprehensive services for children with CP in LMICs.

Objective To systematically review, identify and report the screening tools used for early identification of developmental delay in low- and middle-income countries.Design Systematic review.Data sources Four bibliographic databases: Medline (1946 to 13 July 2020), Embase (1974 to 13 July 2020), Scopus (1823 to 11 July 2020) and PsycINFO (1987 to July week 1 2020).Eligibility criteria Peer-reviewed original articles published in English addressing validated culturally sensitive developmental screening tools among children aged

IntroductionCerebral palsy (CP) is the most common physical disability of childhood but has no cure. Stem cells have the potential to improve brain injury and are proposed as a therapy for CP. However, many questions remain unanswered about the most appropriate cell type, timing of infusions, dose required and associated risks. Therefore, human safety and efficacy trials are necessary to progress knowledge in the field.Methods and analysisThis is a single group study with sample size n=12 to investigate safety of single-dose intravenous 12/12 human leucocyte antigen-matched sibling cord blood cell infusion to children with CP aged 1–16 years without immune suppression. The study is similar to a 3+3 design, where the first two groups of participants have severe CP, and the final six participants include children with all motor severities. Children will be monitored for adverse events and the duration that donor cells are detected. Assessments at baseline, 3 and 12 months will investigate safety and preliminary evidence of change in gross motor, fine motor, cognitive and quality of life outcomes.Ethics and disseminationFull approval was obtained from The Royal Children’s Hospital Human Research Ethics Committee, and a clinical trial notification was accepted by Australia’s Therapeutic Goods Administration. Participant guardian informed consent will be obtained before any study procedures. The main results of this study will be submitted for publication in a peer-reviewed journal.Trial registration numberACTRN12616000403437, NCT03087110.

OBJECTIVES:Fathers of infants admitted to Neonatal Intensive Care Unit (NICU) play an important role and have individual needs that are often not recognised. While there is considerable evidence regarding mothers' needs in the NICU, information about fathers' is particularly limited. This study identifies the needs of fathers of newborns admitted to NICU for general surgery of major congenital anomalies, and whether health-care professionals meet these needs. METHODS:Forty-eight fathers of infants admitted for surgery between February 2014 and September 2015 were enrolled in a prospective cohort study. Fathers completed the Neonatal Family Needs Inventory comprising 56 items in 5 subscales (Support, Comfort, Information, Proximity, Assurance) at admission and discharge and whether these needs were met; as well as the Social Desirability Scale. RESULTS:Responses showed Assurance was the most important subscale (M 3.8, SD .26). Having questions answered honestly (M 3.9, SD .20) and knowing staff provide comfort to their infant (M 3.94, SD .24) were fathers' most important needs. By discharge, fathers expressed a greater importance on being recognised and more involved in their infant's care. More than 91% indicated their ten most important needs were met by the NICU health-care professionals, with no significant changes at discharge. Clergical visits (M 2.08, SD 1.21) were least important. CONCLUSIONS:Reassurance is a priority for fathers of neonates in a surgical NICU, particularly regarding infant pain management and comfort. It is important that health-care professionals provide reliable, honest information and open-access visiting. Notably, fathers seek greater recognition of their role in the NICU-beyond being the 'other' parent.

Background: Despite the high burden of childhood disability in low-and middle-income countries (LMICs), the opportunity for early intervention and rehabilitation is very limited. Studies have found that community-based rehabilitation service is effective for children with cerebral palsy (CP); however, such services are not readily available in LMICs, and services run by non-profit organisations on external funding are often not sustainable. In this study, we report the lesson learnt in establishing a social business model of early intervention and rehabilitation services for children with CP and adults with disabilities in a rural subdistrict of Bangladesh. Methods: Case study of a rural early intervention and rehabilitation centre (i.e., the model centre) implemented between May 2018 and September 2019. An economic evaluation incorporating gross margin analysis along with descriptive statistics was performed to assess the social business potentials of the model centre. Results: The establishment of this model centre cost ~5955 USD with an average monthly running cost of ~994 USD. During the 17 months study period, 7038 therapy sessions (average eight sessions per patient) were offered to 862 patients with musculoskeletal and neurological disorders. The most common clinical presentations were low back pain (35.6%; n = 307). Six percent (n = 52) of the attendees were children with CP (mean (SD) age 6.3 (4.0) years; 35.7% (n = 19) were female), who received 1392 sessions, on average 27 sessions per child. The centre reached the break-even point at the 13th month and remained profitable for the next 4 months of the study period. An average session fee of 2.2 USD resulted in a gross margin of -1458 USD and 1940 USD in 2018 and 2019, respectively. Revenue to cost ratios for the 2 years were 0.27:1 and 0.51:1 while average rates of return were −41.4% and 10.1%, respectively. Sensitivity analysis revealed that session numbers including 5000, 6000, 7000, 8000, 9000, and 10,000 were required to break even at the session fees of 3.0, 2.50, 2.0, 2.0, 1.5, and 1.5 USD, respectively. Conclusion: Our social business model of an early intervention and rehabilitation service provides evidence of enhancing access to services for children with CP as well as adults with disabilities while ensuring the sustainability of the services in rural Bangladesh.

Abstract Background Gastroschisis is a congenital anomaly of the fetal abdominal wall, usually to the right side of umbilical insertion. It is often detected by routine antenatal ultrasound. Significant maternal and pediatric resources are utilised in the care of women and infants with gastroschisis. Increasing rates of gastroschisis worldwide have led institutions to review local data and investigate outcomes. A collaborative project was developed to review local epidemiology and investigate antenatal and neonatal factors influencing hospital length of stay (LOS) and total parental nutrition (TPN) in infants born with gastroschisis. Methods We performed a five-year review of infants born with gastroschisis (2011–2015) at a major Australian centre. Complex gastroschisis was defined as involvement of stenosis, atresia, ischemia, volvulus or perforation and closed or vanishing gastroschisis. We extracted data from files and databases at the two participating hospitals, a major maternal fetal medicine centre and the affiliated children’s hospital. Results There were 56 infants antenatally diagnosed with gastroschisis with no terminations, one stillbirth (2%) and one infant with ‘vanishing’ gastroschisis. The mean maternal age was 23.9 years (range, 15–39 years). The mean gestation at delivery was 36 weeks (range, 25–39+ 3 weeks). Of the 55 neonates who received surgical management, 62% had primary closure. The median LOS was 33 (IQR, 23–45) days and the median duration of TPN was 26 (IQR, 17–36) days. Longer days on TPN (median 35 vs 16 days, P = 0.03) was associated with antenatal finding of multiple dilated bowel loops. Postnatal diagnosis of complex gastroschisis was made in 16% of cases and was associated with both longer LOS (median 89 vs 30 days, P = 0.003) and days on TPN (median 46 vs 21 days, P = 0.009). Conclusion Complex gastroschisis was associated with greater days on TPN and LOS. We found no late-gestation stillbirths and a low overall rate of 1.8%, suggesting the risk for stillbirth associated with gastroschisis is lower than previously documented. This information may assist counselling families. Improved data collection worldwide may reveal causative factors and enable antenatal outcome predictors.

Abstract Background Gastro-oesophageal reflux (GOR) is common in infants. When the condition causes pathological symptoms and/or complications it is considered gastro-oesophageal reflux disease (GORD). It appears to be increasingly diagnosed and causes great distress in the first year of infancy. In New South Wales (NSW), residential parenting services support families with early parenting difficulties. These services report a large number of babies admitted with a label of GOR/GORD. The aim of this study was to explore the maternal and infant characteristics, obstetric interventions, and reasons for clinical reporting of GOR/GORD in NSW in the first 12 months following birth (2000–2011). Methods A three phase, mixed method sequential design was used. Phase 1 included a linked data population based study (n = 869,188 admitted babies). Phase 2 included a random audit of 326 medical records from admissions to residential parenting centres in NSW (2013). Phase 3 included eight focus groups undertaken with 45 nurses and doctors working in residential parenting centres in NSW. Results There were a total of 1,156,020 admissions recorded of babies in the first year following birth, with 11,513 containing a diagnostic code for GOR/GORD (1% of infants admitted to hospitals in the first 12 months following birth). Babies with GOR/GORD were also more likely to be admitted with other disorders such as feeding difficulties, sleep problems, and excessive crying. The mothers of babies admitted with a diagnostic code of GOR/GORD were more likely to be primiparous, Australian born, give birth in a private hospital and have: a psychiatric condition; a preterm or early term infant (37-or-38 weeks); a caesarean section; an admission of the baby to SCN/NICU; and a male infant. Thirty six percent of infants admitted to residential parenting centres in NSW had been given a diagnosis of GOR/GORD. Focus group data revealed two themes: “It is over diagnosed” and “A medical label is a quick fix, but what else could be going on?” Conclusions Mothers with a mental health disorder are nearly five times as likely to have a baby admitted with GOR/GORD in the first year after birth. We propose a new way of approaching the GOR/GORD issue that considers the impact of early birth (immaturity), disturbance of the microbiome (caesarean section) and mental health (maternal anxiety in particular).

Background: This study aimed to describe the epidemiology of malnutrition among children with cerebral palsy (CP) in low- and middle-income countries (LMICs). Methods: Data from children with confirmed CP aged

We evaluated the outcome of a community-based early intervention and habilitation for children with cerebral palsy (CP) in Bangladesh. Children registered on the Bangladesh CP Register (BCPR) were recruited in two groups for this study: Group A received a comprehensive six-month long community-based caregiver-led intervention program at the “Shishu Shorgo” (Bengali title, which translates to ‘Children’s Heaven’) Early Intervention and Rehabilitation Centres developed to support participants from the BCPR. Group B received standard care. A quasi-experimental study was conducted. Data were obtained at baseline, at the end of the program (i.e., 6 months), and at a 12-month follow-up. Outcome measures for children included gross motor functional measure (GMFM-66), Communication Function Classification System (CFCS), and Viking Speech Scale (VSS) and, for adult caregivers, the depression, anxiety, and stress scale (DASS 21). Between October 2016 and March 2017, 156 children with CP were recruited (77 in Group A and 79 in Group B). The total score of GMFM-66, CFCS level, and VSS level significantly improved statistically in Group A (p < 0.05 for all) and deteriorated in Group B (p < 0.001, p = 0.095, p = 0.232). The intervention showed promising outcomes particularly for children with CP under five years of age. There is a need for caregiver-led community-based programs for children with CP in LMICs.

Background: We aimed to estimate the burden and underlying risk factors of malnutrition among children and adolescents with cerebral palsy in Arabic-speaking countries. Methods: OVID Medline, OVID Embase, CINAHL via EBSCO, Cochrane Library, and SCOPUS databases were searched up to 3 July 2021. Publications were reviewed to identify relevant papers following pre-defined inclusion/exclusion criteria. Two reviewers independently assessed the studies for inclusion. Data extraction was independently completed by two reviewers. Descriptive and pooled analysis has been reported. Results: From a total of 79 records screened, nine full-text articles were assessed for eligibility, of which seven studies met the inclusion criteria. Study characteristics, anthropometric measurements used, and nutritional outcome reported varied between the studies. The included studies contained data of total 400 participants aged 1–18 years. Overall, (mean: 71.46%, 95% confidence interval: 55.52–85.04) of children with cerebral palsy had at least one form of malnutrition. Severe gross motor function limitation, feeding difficulties, cognitive impairment and inadequate energy intake were the commonly reported underlying risk factors for malnutrition among children with cerebral palsy. Conclusions: The burden of malnutrition is high among children with cerebral palsy in Arabic-speaking countries. More research is needed for better understanding of this public health issue in these countries.

Cerebral palsy (CP) diagnosis is historically late, at between 12 and 24 months. We aimed to determine diagnosis age, fidelity to recommended tests and acceptability to parents and referrers of an early diagnosis clinic to implement a recent evidence-based clinical guideline for the early diagnosis of CP. A prospective observational case series of infants N = 92 (84%) of infants seen had neuroimaging, including n = 53 (49%) who had magnetic resonance imaging (MRI), showing recommended tests are feasible. Referral to CP-specific interventions was at 4.7 [3.0] months, sometimes before referral to clinic. Clinicians can be confident CP can be diagnosed well under 12 months using recommended tools. This clinic model is acceptable to parents and referrers and supports access to CP-specific early interventions when they are likely to be most effective.

Background: The study aimed to define the burden and underlying risk factors of malnutrition among children with cerebral palsy (CP) in Gorkha district, Nepal. Methods: The first population-based register of children with CP in Gorkha, Nepal (i.e., Nepal CP Register—NCPR) was established in 2018. Children aged p = 0.02, p < 0.001) and/or Gross Motor Function Classification System (GMFCS) level (III–V) (p = 0.01, p < 0.001) and/or who were not enrolled in school (p = 0.01, p < 0.001). In adjusted analysis, GMFCS level III–V and non-attendance to school significantly increased the odds of stunting by 8.2 (95% CI 1.6, 40.8) and 4.0 (95% CI 1.2, 13.2) times, respectively. Conclusions: the high rate of different forms of undernutrition among children with CP in Gorkha, Nepal is concerning. Need-based intervention should be taken as priority to improve their nutritional outcome.