Partnering Early to Provide for Infants At Risk of Cerebral palsy (PĒPI ARC): Protocol for a feasibility study of a regional hub for early detection of cerebral palsy in Aotearoa New Zealand

Abstract

ABSTRACTIntroductionCerebral palsy (CP) can now be diagnosed as early as three months of age in infants with identified CP risk factors, but 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 will incorporate 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.Methods and AnalysisA non-randomised feasibility study will be conducted from the tertiary Neonatal Intensive Care Unit in Wellington and includes seven regional referral centres, servicing nearly 30% of the NZ total population. Families of infants with high risk of neurodevelopmental impairment will be invited to participate, as well as health professionals interacting with the Hub. Mixed methods will be 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.Ethics and DisseminationThe New Zealand Health and Disability Ethics Committees approved this study (HDEC:2022 FULL 13434). Findings will be disseminated in peer-reviewed journals, conference presentations and via professional networks.RegistrationAustralian New Zealand Clinical Trials Registry: ACTRN12623000600640STRENGTHS AND LIMITATIONS OF THE STUDYThe New Zealand Best Practice Recommendations for early detection of CP are based on international guidelines and have been peer reviewed for the Aotearoa New Zealand context.Local and regional health professionals have collaborated to inform the PĒPI ARC protocol with the aim to improve access to early CP assessments and early detection rates of CP.Reduction in health inequities for Māori and Pasifika have been targeted through informed partnerships.Resource development and planning of PĒPI ARC Hub has been co-designed with families and recognises the ecological context of Aotearoa New Zealand.A limitation is that only high-risk infants with “newborn detectable risks” will be included in the study.