Longitudinal cohort study investigating neurodevelopmental and socioemotional outcomes in school-entry aged children after open heart surgery in Australia and New Zealand: the NITRIC follow-up study protocol

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 <2 years of age, investigating the effect of gaseous nitric oxide applied into the cardiopulmonary bypass oxygenator during heart surgery. The NITRIC follow-up study will follow this cohort annually until 5 years of age to assess outcomes related to cognition and socioemotional behaviour at school entry, identify risk factors for adverse outcomes and evaluate the performance of screening tools. Methods and analysis: Approximately 1150 children from the NITRIC trial across five sites in Australia and New Zealand will be eligible. Follow-up assessments will occur in two stages: (1) annual online screening of global neurodevelopment, socioemotional and executive functioning, health-related quality of life and parenting stress at ages 2–5 years; and (2) face-to-face assessment at age 5 years assessing intellectual ability, attention, memory and processing speed; fine motor skills; language and communication; and socioemotional outcomes. Cognitive and socioemotional outcomes and trajectories of neurodevelopment will be described and demographic, clinical, genetic and environmental predictors of these outcomes will be explored. Ethics and dissemination: Ethical approval has been obtained from the Children’s Health Queensland (HREC/20/QCHQ/70626) and New Zealand Health and Disability (21/NTA/83) Research Ethics Committees. The findings will inform the development of clinical decision tools and improve preventative and intervention strategies in children with CHD. Dissemination of the outcomes of the study is expected via publications in peer-reviewed journals, presentation at conferences, via social media, podcast presentations and medical education resources, and through CHD family partners.Trial registration numberThe trial was prospectively registered with the Australian New Zealand Clinical Trials Registry as ‘Gene Expression to Predict Long-Term Neurodevelopmental Outcome in Infants from the NITric oxide during cardiopulmonary bypass to improve Recovery in Infants with Congenital heart defects (NITRIC) Study – A Multicentre Prospective Trial’. Trial registration: ACTRN12621000904875

Paediatric traumatic brain injury and the dysregulation profile: The mediating role of decision-making

Decision-making is often impacted by paediatric traumatic brain injury (TBI). However, there are few tools available to assess these skills in children, with even less research on the consequences of decision-making deficits on dysregulation following TBI. This prospective preliminary study investigated whether decision-making mediated the effect of TBI on dysregulation in children. The performance of school-aged children aged between 7 and 15 years with TBI (n = 49) and that of typically developing controls (n = 22) was compared on The Decision-making Task, and on parent ratings of the dysregulation profile as characterized by the Child Behaviour Checklist-Dysregulation Profile. Relative to the Control group, the TBI group performed more poorly on the decision-making task, and parents of the TBI group rated their children to be more poorly on the dysregulation profile. Mediation analyses indicated that decision-making mediated the relationship between TBI and the dysregulation profile. Our preliminary findings suggest the need for further research in the area of decision-making, and its impact on dysregulated behaviours in children following TBI

The decision-making task:Development and evaluation in a paediatric traumatic brain injury population

Assessment measures that quantify decision-making abilities in children and adolescents are limited. In the current study, a novel computerized Decision-Making Task (DMT), which identifies the process that is involved in decision-making, was developed based on an existing information-boards paradigm. The overall aim was to validate the DMT in a paediatric TBI population. This prospective study investigated the performance on the DMT for children post-TBI (n = 49; 7–15 years) compared to typically developing controls (n = 22; 7–15 years), and investigated the psychometric properties of the DMT by examining internal consistency-related reliability, convergent validity (measures of decision-making, working memory, functional outcomes, and behaviour), and divergent validity (vocabulary). Significant differences were detected for performance on the DMT between children post-TBI and the control group. Psychometric properties of the DMT were acceptable, with variable findings for convergent validity (working memory, functional outcomes, and behaviour). This is the first study to develop and investigate a novel computerised task to assess decision-making skills in a paediatric TBI population. Results cautiously suggest that the DMT is a valid and a reliable measure of decision-making in our clinical sample.</p

Characterising the Educational Experiences and Mental Health of Children with Pre-Existing Learning Difficulty or Specific Learning Disorder (SLD) during the COVID-19 Pandemic

This prospective study sought to characterise the educational experiences, mental health, and behavioural functioning of Australian children with a pre-existing learning difficulty or specific learning disorder (SLD) during the COVID-19 pandemic. The study also evaluated the potential role of parent psychological distress as a risk factor for poorer child functioning in this high-risk population. Using a prospective longitudinal design, the study involved 58 parents of children and adolescents with a pre-existing learning difficulty or specific learning disorder (M age = 11.9 years; range 7–17 years) who were initially referred to a state-wide diagnostic centre for specific learning disorders in Melbourne, Victoria, Australia. Child outcomes were assessed using the COVID-19 Wellbeing and Mental Health Survey (a modified version of the CoRonavIruS Health Impact Survey [CRISIS] tool), the Strengths and Difficulties Questionnaire (SDQ), and the Emotional Distress Scale from the Patient-Reported Outcomes Measurement Information System (PROMIS). Parents’ mental health was assessed using the CRISIS tool and the Kessler Psychological Distress Scale (K10). In keeping with initial predictions, a large proportion of parents expressed significant disruption to child educational experience and routines, including challenges related to child engagement in remote learning platforms during COVID-19. Compared to pre-pandemic mental health symptom ratings, children experienced significantly higher symptoms of worry, negative thoughts, loneliness, agitation, and aggression during the pandemic period (all p p = 0.003) and more frequent child behavioural difficulties (p = 0.004). These results help elucidate the specific psychological and educational challenges faced by children with pre-existing learning difficulty or SLD during the COVID-19 pandemic. Family-centred intervention and/or supports may help to address the unique educational and psychological needs of young people with pre-existing learning differences and their families during future global pandemics

Longitudinal cohort study investigating neurodevelopmental and socioemotional outcomes in school-entry aged children after open heart surgery in Australia and New Zealand: the NITRIC follow-up study protocol

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 Methods and analysis: Approximately 1150 children from the NITRIC trial across five sites in Australia and New Zealand will be eligible. Follow-up assessments will occur in two stages: (1) annual online screening of global neurodevelopment, socioemotional and executive functioning, health-related quality of life and parenting stress at ages 2-5 years; and (2) face-to-face assessment at age 5 years assessing intellectual ability, attention, memory and processing speed; fine motor skills; language and communication; and socioemotional outcomes. Cognitive and socioemotional outcomes and trajectories of neurodevelopment will be described and demographic, clinical, genetic and environmental predictors of these outcomes will be explored. Ethics and dissemination: Ethical approval has been obtained from the Children's Health Queensland (HREC/20/QCHQ/70626) and New Zealand Health and Disability (21/NTA/83) Research Ethics Committees. The findings will inform the development of clinical decision tools and improve preventative and intervention strategies in children with CHD. Dissemination of the outcomes of the study is expected via publications in peer-reviewed journals, presentation at conferences, via social media, podcast presentations and medical education resources, and through CHD family partners. Trial registration number: The trial was prospectively registered with the Australian New Zealand Clinical Trials Registry as € Gene Expression to Predict Long-Term Neurodevelopmental Outcome in Infants from the NITric oxide during cardiopulmonary bypass to improve Recovery in Infants with Congenital heart defects (NITRIC) Study - A Multicentre Prospective Trial'. Trial registration: ACTRN12621000904875.</p