Title: Childhood outcomes after perinatal brain injury
Funder: Department of Health and Social Care

Abstract: Aim: To conduct a retrospective population-based matched cohort study investigating health and educational outcomes after perinatal brain injury. Background:Perinatal brain injuries can have devastating consequences for children, parents, and society as a whole. Incremental advances in neonatal care have markedly improved short-term survival in this population; however, there are considerable gaps in our knowledge about the long-term impact of perinatal brain injuries. This project will utilise existing routine data to explore childhood outcomes after perinatal brain injury to delineate prognosis for this population and identify their health and educational needs, to ultimately inform health policy and resource provision. Design:Workstream 1: Systematic reviewA previous systematic review exploring outcomes after perinatal brain injury will be updated, ensuring that contemporary evidence underpins this fellowship.Workstream 2: Creating a matched cohort I will identify infants with perinatal brain injury (born 01/01/2008 - 31/12/2019), using a pre-existing definition developed with data held in the National Neonatal Research Database (NNRD) by the Department for Health and Social Care. Preterm infants with brain injury will be matched 1:1 with matched comparator infants in the NNRD using propensity scores accounting for a range of confounders. Term infants with brain injury will be matched on sex, year of birth, Lower Layer Super Output Area, birth weight, gestation, and multiplicity, using a 1:3 algorithm, to comparator infants in the general population using Office of National Statistics (ONS) data.Workstream 3: Health outcomes The matched cohort will be linked to ONS mortality data, Hospital Episode Statistics data, and the Mental Health Services Dataset at NHS Digital to acquire longitudinal outcome data. This will enable investigation of the impact of perinatal brain injuries on the risk of neurodisabilities; all-cause mortality; mental health and behavioural conditions, and chronic health conditions up to the age of 12 years.Workstream 4: Educational outcomes The matched cohort created will be linked to the National Pupil Database. This will enable investigation of how perinatal brain injury impacts school performance on national tests, special educational needs, and school attendance up to the age of 12 years.Crosscutting workstream: Patient and public involvementThis crosscutting work stream will involve focus groups with families affected by perinatal brain injury: initially to identify meaningful outcomes measures, and later to explore perception of study results, different communication strategies and to co-develop communication aids. Anticipated impact for parents, children, and the NHSFindings will be corroborated with stakeholders from government, the NHS, and families to understand how best to adapt policy, health, and education services. Additionally, co-developed communication aids will be disseminated for use across neonatal units. The evidence generated by this fellowship will enable accurate family-centric discussions about what the future may hold as well as informing clinical practice throughout the NHS. This fellowship will help us to understand the impact of national quality improvement initiatives targeting brain injury, facilitate service planning, and provide essential insight into how we can best support these children to reach their full potential.

Lay abstract: Background Around 700,000 babies are born in the UK every year, but some are very unwell at birth and need intensive care. Annually, more than 3,400 babies in England suffer a 'brain injury' around the time of birth. These brain injuries have many different causes e.g. a lack of oxygen at birth, bleeding into the brain, and infections like meningitis. These brain injuries can have lifelong effects for children and their families. Understanding and indeed tackling brain injuries around the time of birth is a government priority to make the UK 'the safest place in the world to have a baby'. To understand the impact of brain injuries and to know how best to support children and families, we need to gather information about the longer-term effects on children's lives such as their physical health, mental health, and educational attainment. This is important information to prepare families for the future and to plan health and educational services to support affected children to reach their full potential.The UK is the only place in the world where this study is possible. It used to be very expensive and difficult to carry out such studies in-person but - with the availability of electronic records and routine national data -h; it is now possible to look at this important topic for the whole population of children in England for the first time. Aims and objectives The aim of the fellowship is to carry out a population study of children born in England 2008-2019 to investigate differences in long-term health and educational outcomes in those with brain injury around the time of birth compared to those without brain injury. Design and methods Using available national databases, I will identify all babies with brain injury born in England between 2008-2019, and compare their outcomes to similar babies without brain injury. An estimated 130,842 children will be included in this study. By linking together different information from health (NHS) and school records, I will have a complete picture of these children's health and educational outcomes. This will give us information about disability and death after brain injury, as well as: mental health and behavioural problems; chronic health conditions; school performance on national tests; and any special educational needs up to the age of 12 years. This will help us to understand how having a brain injury affects the rest of a child's life. This will also help us to understand what health and educational support each child may need, so that services can be re-structured to better help them. Patient and public involvement Parents and representatives from Bliss, the Meningitis Research Foundation and the Great Ormond Street parent advisory committee have played an important role in shaping this project and will continue to play a key role as project advisors throughout my fellowship. In the first year, I will lead a focus group with affected parents to make sure we are asking the right questions in our study. Later in the fellowship, I will use focus groups to present the results and explore different ways of communicating them to the public and affected families. Building on these sessions, we will co-develop a communication aid to help families and healthcare professionals to have these discussions on the neonatal unit. DisseminationFindings will be disseminated to the public and parents via the Bliss and Meningitis Research Foundation social media platforms. We will publicise our findings using social media and share our resources with neonatal units throughout the country. Academic outputs will be published in peer-reviewed journals and presented internationally to reach the clinical and academic community.

Research activity codes: 2.1 BIOLOGICAL AND ENDOGENOUS FACTORS;7.1 INDIVIDUAL CARE NEEDS
Health categories: NEUROLOGICAL