Abell Bridget, Rodwell David, Eagleson Karen J, Auld Ben, Bora Samudragupta, Kasparian Nadine A, Justo Robert, Parsonage William, McPhail Steven M
Australian Centre for Health Services Innovation and Centre for Healthcare Transformation, School of Public Health and Social Work, Faculty of Health, Queensland University of Technology, Brisbane, QLD, Australia.
Centre for Accident Research & Road Safety-Queensland (CARRS-Q), School of Psychology and Counselling, Faculty of Health, Queensland University of Technology, Brisbane, QLD, Australia.
Pediatr Res. 2024 Nov 23. doi: 10.1038/s41390-024-03722-2.
International consensus exists for neurodevelopmental follow-up care of children with congenital heart disease (CHD) to support timely intervention for developmental delays. Yet, documentation of how this care is implemented in Australia is lacking. This study aimed to identify, categorise, and understand care pathways and services supporting neurodevelopmental follow-up of Australian children with CHD.
A qualitative study, using semi-structured virtual interviews with healthcare professionals across Australia involved in neurodevelopmental care of children with CHD (n = 52) was conducted. Data was analysed using a rapid qualitative approach including structured templates, data reduction, and inductive-deductive analysis of matrices to synthesise data.
Most neurodevelopmental follow-up was delivered as pathways through existing healthcare services rather than centre-based cardiac programmes. Service availability and accessibility varied across the country. Community-based primary care services, paediatric clinics, child development services, neonatal follow-up programmes, and allied health providers were commonly accessed pathway components. However, participants reported a lack of formal structures to coordinate care pathways.
The study identifies how cardiac neurodevelopmental follow-up in Australia can be embedded into existing services and adapted to meet local needs and contexts. Future approaches will benefit from integrating, leveraging, and growing existing services, although adoption of new models may be needed.
This study found neurodevelopmental follow-up care for children with CHD in Australia to be delivered as pathways through existing services rather than the centre-based cardiac follow-up programmes common in North America. Our study describes alternate options, including providers in community settings, that can be used for follow-up care delivery and how these can adapted to local context. Future approaches will benefit from integrating, leveraging, and growing existing services, although adoption of new models may be needed. Greater systematic coordination of care pathways is still required to optimise service delivery, inform planning, and support implementation of national standards of care.
对于先天性心脏病（CHD）患儿的神经发育随访护理，国际上已达成共识，以支持对发育迟缓进行及时干预。然而，澳大利亚缺乏关于如何实施这种护理的记录。本研究旨在识别、分类并了解支持澳大利亚CHD患儿神经发育随访的护理途径和服务。
开展了一项定性研究，通过对澳大利亚参与CHD患儿神经发育护理的医疗保健专业人员进行半结构化虚拟访谈（n = 52）。使用快速定性方法分析数据，包括结构化模板、数据简化以及对矩阵进行归纳 - 演绎分析以综合数据。
大多数神经发育随访是通过现有医疗服务以途径的形式提供，而非基于中心的心脏项目。全国各地的服务可用性和可及性各不相同。基于社区的初级保健服务、儿科诊所、儿童发育服务、新生儿随访项目以及专职医疗服务提供者是常见的途径组成部分。然而，参与者报告称缺乏协调护理途径的正式结构。
该研究确定了澳大利亚心脏神经发育随访如何能够融入现有服务并进行调整以满足当地需求和情况。未来的方法将受益于整合、利用和拓展现有服务，尽管可能需要采用新的模式。
本研究发现澳大利亚CHD患儿的神经发育随访护理是通过现有服务以途径的形式提供，而非北美常见的基于中心的心脏随访项目。我们的研究描述了包括社区环境中的提供者在内的替代选项，这些选项可用于随访护理，并说明如何使其适应当地情况。未来的方法将受益于整合、利用和拓展现有服务，尽管可能需要采用新的模式。仍需要对护理途径进行更系统的协调，以优化服务提供、为规划提供信息并支持国家标准护理的实施。
