Paving the pathway to clinical trial

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Kids Critical Care Research, in collaboration with the Kids Heart Centre and Kids Neuroscience Centre at the Children’s Hospital, Westmead, is undertaking a comprehensive study on the long-term neurodevelopmental outcomes in children following cardiac arrest and ECMO care.

Neurodevelopmental Outcomes in Childhood After Cardiac Arrest and ECMO Care

Kids Critical Care Research, in collaboration with the Kids Heart Centre and Kids Neuroscience Centre at the Children’s Hospital, Westmead, is undertaking a comprehensive study on the long-term neurodevelopmental outcomes in children following cardiac arrest and ECMO care. The lead researcher is an early post-doctoral neuropsychologist, who is under the mentorship of a senior clinical neuropsychologist at the Kids Neuroscience Centre.

The project aims to identify and assess babies and children who may be at risk of brain injury after suffering a cardiac arrest or severe heart/lung failure necessitating extracorporeal life support, known as ECMO. This is supported by data from international pediatric cardiac arrest (PediRES-Q) and extracorporeal life support (ELSO) registries.

Data Collection and Analysis

A variety of assessments are proposed to describe neurodevelopmental outcomes in survivors as they progress through childhood up to 14 years old. This information will improve understanding of neurodevelopmental status and health care needs in these children and provide baseline data for future research studies aimed at testing targeted therapeutic interventions. Additionally, it will aid in improved planning of transition care needs for older children and young adults following severe illness with cardiac arrest or refractory shock.

This research will also provide new information from a cross sectional sample of childhood survivors of cardiac arrest or ECMO. This information from detailed face to face neuropsychological assessment between 4 and 14 years of age will describe the complex psychosocial and neurodevelopmental status of children at high risk of hypoxic-ischaemic brain injury during severe illness requiring CPR and/or ECMO. This data will reveal patterns of neuropsychological outcomes currently unavailable from questionnaire studies and are required to address significant gaps in knowledge relevant to early childhood development.

International Impact

Further, new knowledge from this research is applicable to children in other health care systems in Australia and in similar health care settings internationally. Registry datasets utilised in this study span multiple centres internationally and this research has potential to add important outcomes to existing registry data. This will act as a major enabler to inform design of future large scale research studies in these children.

Collaborative Framework

This research establishes a collaborative framework for long-term neuropsychological research in vulnerable children in NSW. Importantly, it extends existing research capability to include older children since long-term neuropsychological deficits may only become apparent at school age and has the potential to inform policy in health and education. This project addresses an important knowledge gap and will help achieve Goal 3 of the NSW Health First 2000 days strategic policy framework: Evidence-based, informed and integrated care for children identified as developmentally at risk so that they may receive early, integrated assessment and intervention services.

Paving the pathway to trial

Knowledge of long-term neuropsychological outcomes is required to design and test effectiveness of therapeutic interventions at all stages of care, from the paediatric intensive care unit to rehabilitation care in the local community. Programs of rehabilitation are described for adults but there is little evidence to inform effectiveness of rehabilitation or specific therapeutic interventions in early childhood following severe illness with cardiac arrest or requiring ECMO.

The information from this study will improve understanding of neurodevelopmental status and health care needs in these children and provide baseline data for future research studies to test targeted therapeutic interventions, and improved planning of transition care needs for older children and young adults following cardiac arrest or refractory shock. The longitudinal design of this research project will inform important outcomes for a future longitudinal program of follow-up or interventional clinical trial in childhood cardiac arrest and/or ECMO.