Allermo Fletcher Angelica, Kilgour Gaela, Sandle Meghan, Kidd Sally, Sheppard Alison, Swallow Stephanie, Stott Ngaire Susan, Battin Malcolm, Korent Wyllis, Williams Sian A
Neonatal Intensive Care Unit, Wellington Regional Hospital, Wellington, New Zealand.
Queensland Cerebral Palsy Research and Rehabilitation Service, The University of Queensland, Brisbane, QLD, Australia.
Front Pediatr. 2024 Apr 4;12:1344579. doi: 10.3389/fped.2024.1344579. eCollection 2024.
Cerebral palsy (CP) can now be diagnosed in infants with identified CP risk factors as early as three months of age; however, many barriers prevent equitable access to early detection pathways. The "Partnering Early to Provide for Infants At Risk of Cerebral Palsy" feasibility study (PĒPI ARC) seeks to trial a new approach to decrease inequitable health service in Aotearoa New Zealand for high-risk infants and their families. PĒPI ARC incorporates face-to-face clinics, an in-person and virtual Hub, and the use of telehealth to enable flexible access to CP assessments and support for health professionals in early CP detection.
A non-randomised feasibility study was conducted from a tertiary Neonatal Intensive Care Unit (NICU) in Wellington and included seven regional referral centres, servicing nearly 30% of the total population in New Zealand (NZ). The families of infants with a high risk of neurodevelopmental impairment and health professionals interacting with the Hub were invited to participate. Mixed methods were used to evaluate the (i) equitable implementation of an early detection pathway, (ii) acceptability, (iii) demand among families and health professionals, (iv) efficacy in relation to reducing the age of receipt of CP diagnosis, and (v) the experiences around communication and information sharing.
The NZ Health and Disability Ethics Committee approved this study (HDEC: 2022 FULL 13434). The findings will be disseminated in peer-reviewed journals, in conference presentations, and via professional networks.
Australian New Zealand Clinical Trials Registry: ACTRN12623000600640.
现在，早在婴儿三个月大时，若其具有已确定的脑瘫风险因素，就可诊断出脑瘫；然而，诸多障碍阻碍了公平地获得早期检测途径。“早期合作以照顾有脑瘫风险的婴儿”可行性研究（PĒPI ARC）旨在试验一种新方法，以减少新西兰（Aotearoa）针对高危婴儿及其家庭的不公平医疗服务。PĒPI ARC纳入了面对面诊所、一个线下和虚拟中心，并利用远程医疗，以便灵活地进行脑瘫评估，并为健康专业人员在脑瘫早期检测中提供支持。
在惠灵顿的一家三级新生儿重症监护病房（NICU）开展了一项非随机可行性研究，该研究包括七个区域转诊中心，服务于新西兰近30%的总人口。邀请了有神经发育障碍高风险婴儿的家庭以及与该中心互动的健康专业人员参与。采用混合方法评估：（i）早期检测途径的公平实施情况；（ii）可接受性；（iii）家庭和健康专业人员的需求；（iv）在降低脑瘫诊断接收年龄方面的效果；以及（v）沟通和信息共享方面的体验。
新西兰健康与残疾伦理委员会批准了本研究（HDEC：2022 FULL 13434）。研究结果将在同行评审期刊、会议报告以及通过专业网络进行传播。
澳大利亚新西兰临床试验注册中心：ACTRN12623000600640。
