1091 A mixed methods study of the follow up of extremely preterm babies in the North East of England

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<h3>Background</h3> Neonatal intensive care medicine has improved over time, leading to improved survival of preterm babies (babies born before 37 weeks gestation age, GA). The National Institute for Health and Care Excellence (NICE) recommends developmental follow-up of children and young people born preterm. The follow up of preterm babies influences their outcomes, determines their parents’ needs, and informs planning of health and social care resources. <h3>Objectives</h3> This study used mixed methods to assess the neonatal follow up of extremely preterm babies (born before 28 weeks GA), and parents’ and health care professionals’ (HCPs) perceptions of the neonatal follow up, to describe barriers and facilitators to neonatal follow up. <h3>Methods</h3> Phase one: an analysis of demographic, morbidity, mortality, and 2-year neurodevelopmental outcomes data of a cohort of babies born before 28 weeks gestation in the North East of England, between July 2015 - June 2016. Phase two: a qualitative study of parents’ and HCPs’ views, perceptions, and experiences of the follow up of extremely preterm babies. We interviewed 23 parents and 20 HCPs; thematic analysis was used. <h3>Results</h3> In phase one, 61% of the eligible babies were included in the study; 86.2% of the babies included were born after 24+0 weeks GA, with a mean GA of 25+3 weeks and a mean birth weight of 805 grams; 79.3% babies were discharged home on oxygen. 22.3% babies showed moderate to severe developmental delay. The analysis of the parents’ interviews identified two key themes: ‘Emotions’ (subthemes: ‘The emotions related to the preterm birth – a rollercoaster’, ‘The post-traumatic stress syndrome’, ‘The overprotective parent’) and ‘Here and now’ (subthemes: ‘The storytelling’, ‘The coping mechanism’, ‘The impact of being born early’, ‘The value of the follow up’). The onset of preterm labour marked the beginning of a different experience. The quality of this experience impacted on the bonding and relationship between baby and parents, and the relationship between parents and HCPs. Follow up offered re-assurance. The analysis of the health professional’s interviews identified two key themes: ‘Communication’ (subthemes: ‘The Journey’, ‘The multi-disciplinary team post discharge’) and ‘The Child Not Brought’ (subthemes: ‘The impact on the baby’, ‘The NHS point of view’, ‘Why do parents not attend?’). Health professionals described the birth and follow up of an extremely preterm baby as a journey. The continuity of care and the good communication contributed to improve this journey. Due to the complexity of the team involved in the follow up of the extremely preterm baby, communication may suffer at different levels. <h3>Conclusions</h3> NICE recommends follow up of babies born preterm to school age, however there is no established referral pathway into the paediatric services. Parents value continuity of care, which may be lacking if there is no clear transition process between the neonatal and paediatric teams. Ensuring a smooth transition at every level by designing a clear pathway for the neonatal follow up of extremely preterm babies and the transition to the paediatric services may improve the follow up process, parents’ engagement with the system and their babies’ outcomes.