CHD LIFE+ Jurisdictional projects
CHD LIFE+ is funding five national partners to complete a local project to support the design of effective models of care to support the long-term developmental needs of children with CHD. Projects will run from March 2024 to March 2025. Projects aim to address local priorities and needs while also informing and supporting the broader CHD LIFE+ study objectives.
Sydney Children’s Hospitals Network, New South Wales
NeuroCHD-NSW aims to develop an enhanced plan for delivery of neurodevelopmental surveillance, evaluation, and intervention to meet the needs of individuals with CHD, their families and caregivers, and to align with the National Standards of Care for Childhood-onset Heart Disease. The team will review existing neurodevelopmental services, resources, and pathways over the past 2 years via a comprehensive audit of services, interrogation of cardiac service databases, and interviews or focus groups with key stakeholders, including patients and families. Findings will inform the development of a roadmap and triage process for enhanced delivery of cardiac neurodevelopmental services for patients in NSW, with a strategy for implementation, data collection, and future research.
Investigators
Professor Nadine Kasparian
Professor Gary Sholler
Professor Nadia Badawi
Project team
Dianne Swinsburg (co-coordinator)
Dr Natalie Fairbairn (co-coordinator)
Department of Health – Northern Territory Regional Health Service
Approximately 50% of congenital heart disease (CHD) cases in the Northern Territory occur in Aboriginal infants, and a further 25% of cases are in children of non-English speaking families. This project aims to review historical neurodevelopmental outcomes and neurodevelopmental screening attendance rates among NT children with CHD, as well as ethnocultural and linguistic data to enable mapping of at-risk populations by geographic, ethnocultural and linguistic distribution. A retrospective review will be undertaken for all children with CHD requiring surgery before 12 months of age during January 2001 and December 2022. Review findings aim to inform the development culturally sensitive and linguistically agile processes to explore patient and parent perspectives on their experience of neurodevelopmental follow up, through consultation and collaboration with the largest language and cultural groups represented in this cohort. The project aims to establish a foundation for ongoing research and culturally safe service development to improve the long-term neurodevelopmental care of NT children with CHD.
Partner Investigators
Dr Bo Remenyi
Dr Simone Martin (coordinator)
Project team
Professor Anna Ralph
Gladys Ngugi, CNC
Cecelia Cooke, RN
Murdoch Children’s Research Institute, Victoria
The project aims to evaluate the neurodevelopmental needs of Royal Children’s Hospital (RCH) patients with complex forms of childhood onset heart disease (CoHD) and their families to inform the co-design of services that address local needs and align with the National Standards of Care for Childhood-onset Heart Disease. The mixed methods approach will involve surveying parents and adults (up to 25 year of age) with complex forms of CoHD to understand current provision of neurodevelopmental services. Qualitative interviews will be conducted to identify this cohort’s unmet neurodevelopmental needs. A series of focus groups with key stakeholders, including children and young people with CoHD, parents and carers, and clinicians will be conducted to co-design a new family-centred model of care. These activities will form the foundation of a proposal to develop a dedicated neurodevelopmental follow up program for children with complex forms of CoHD.
Partner investigators
Professor Michael Cheung
Dr Julia Charlton
Project team
Professor Amanda Wood (coordinator)
Dr Bryn Jones
Dr Leah Hickey
Child and Adolescent Health Service, Western Australia
The project aims to define current service delivery of, and access to appointments for neurodevelopment assessment, screening and/or intervention for paediatric patients with CHD in Western Australia to ultimately inform the development of a neurodevelopmental pathway and implementation plan. A retrospective review of departmental data will identify children who have undergone bypass cardiac surgery under one year of age and the neurodevelopmental services they have accessed. Families of these children will be invited to participate in an online/telephone survey to gain an understanding of the availability and accessibility of required neurodevelopmental services across the state. Findings from the review and surveys will inform a series of focus groups with key stakeholders to define and gain consensus on an appropriate neurodevelopmental pathway suited to Western Australia’s context and population.
Partner investigators
Dr Steve Shipton
Dr Cameron Seaman
Project team
Dr Mary Tallon (coordinator)
Developmental Screening in Congenital Heart Disease across South Australia
The project aims to assess the current developmental surveillance of children with complex CHD in South Australia. The existing South Australian system for developmental surveillance of children with complex CHD will be described to identify potential challenges and gaps in the current system. The outcomes of this project are intended to inform a future model of care to screen all children with CHD across the state. A retrospective review of departmental databases will identify children with complex CHD and determine the current rates and types of developmental screening. Primary care givers of children with complex CHD will be invited to share their experience and perception of the current neurodevelopmental model of care in South Australia.
Partner investigators
Dr Andrew Kelly
Dr Karina Laohachai
Dr Rishi Agrawal
Project team
Annette Sargent (coordinator)
Contact
For further information, please contact the Project Coordinator, Jenna English, at
chdlife-plus@qut.edu.au.
