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

To assess the clinical service provision of neonatal follow-up services in the UK in line with UK National Institute for Health and Care Excellence (NICE) guideline NG72, 'Developmental follow-up of children and young people born preterm'. Design: Online survey. Setting: Neonatal units in England, Scotland and Wales (n = 187) in July– September 2022. Participants: Lead neonatal clinicians for neurodevelopmental follow-up. Responses were received from 154 neonatal units, representing 82% of the total. This included 52 out of 58 (89%) Neonatal Intensive Care Units, 68 out of 86 (79%) Local Neonatal Units, and 34 out of 43 (79%) Special Care Baby Units. In total, 136 units (88%) provided neurodevelopmental follow-up for infants born before 30 weeks' gestation, and 75 units (51%) did so for those born before 32 weeks' gestation. Out of 145 responses, 134 units (92%) offered follow-up to infants with brain injury requiring cooling therapy. A 2-year neurodevelopmental face-to-face appointment was available for infants born before 30 weeks' gestation in 129 units (83%), while only ten units (6%) provided a 4-year assessment for those born before 28 weeks' gestation. Additionally, just 13 units (9.6%) directed families to peer support services. The structure and content of neonatal neurodevelopmental follow-up vary widely. Notably, there is a lack of 4-year assessments for infants born preterm, representing a missed opportunity to support school readiness. What is already known on this topic? What this study hopes to add. How this study might affect research, practice, or policy.