Neonatal neurodevelopmental follow-up in the UK: a survey of current practice and future recommendations

What is already known on this topic? Neonatal neurodevelopmental follow-up is a vital aspect of care for early detection of difficulties, timely access to intervention, promotion of long-term health and wellbeing and data collection to contribute to parental counselling. Delivery of neonatal follow-up in line with UK clinical guidelines has not been evaluated. What this study hopes to add. There is wide variation in the inclusion criteria, content, and duration of neonatal neurodevelopmental follow-up in the UK. Only 6.8% of services reported offering infants born < 28 weeks' gestation a face-to-face appointment at four years of age. Recognition that the informational needs of parents may be conflated with the data requirements of clinicians, and this may contribute to suboptimal clinical service provision and limited reliable outcome data. How this study might affect research, practice, or policy. This study highlights the lack of neurodevelopmental surveillance and support for children born < 28 weeks' gestation at four years of age. These data provide evidence for Operational Delivery Networks (ODNs) to understand how neonatal neurodevelopmental follow-up is delivered within their area. This will help inform families about available services, facilitate joint work, and deliver more equitable neonatal follow-up in the UK. Clinicians could improve information sharing with families by signposting to trusted local, community, online, or third-sector support. Further research is necessary to comprehensively understand neonatal and paediatric developmental services from a parent/caregiver perspective and a systems and processes perspective. Clinical policy and guidelines should provide further clarity regarding which services are most appropriate and responsible for delivering this care.