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) Participants: Lead neonatal clinicians for neurodevelopmental follow-up Results Eligible responses were received from 154 neonatal units (82%). This included 52/58 (89%) Neonatal Intensive Care Units, 68/86 (79%) Local Neonatal Units, and 34/43 (79%) Special Care Baby Units. Overall, 136 units (88%) offered neurodevelopmental follow-up for infants born <30 weeks' gestation and 75 (51%) for infants born <32 weeks' gestation. Out of 145 responses, 134 units (92%) offered follow-up to infants with brain injury requiring cooling therapy. The General Movements Assessment was used by 32 units (22%), PARCA-R questionnaire by 52 (35%) and Bayley-III by 80 (55%). A 2-year neurodevelopmental face-to-face appointment was offered to infants born <30 weeks' gestation by 129 units (83%); only ten units (6%) offered a 4-year assessment for infants born <28 weeks' gestation. Conclusions There is wide variation in the structure and content of neonatal neurodevelopmental follow-up. Greater standardisation of services is needed to reduce inequalities in care and improve family experiences.