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

BACKGROUND

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'.

METHODS

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.

RESULTS

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.

CONCLUSIONS

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.

KEY MESSAGES

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.