Title: PREM-PIC - Potential Risk of childrEn born preMature requiring Paediatric Intensive Care: Examining risks of critical illness, and trends in paediatric intensive care utilisation for children born premature.
Funder: Department of Health and Social Care

Abstract: Research question How does being born premature affect the risk of admission to Paediatric Intensive Care Unit (PICU), and what are the trends in utilisation of PICU services for children born premature?' Background Children born premature are at risk of ongoing morbidity and mortality as a result of complications of prematurity. Survival rates have improved over time and babies born even earlier are offered intensive care, increasing the population of survivors. Overall, children born premature are known to be at increased risk of requiring PICU admission in the first few years of life. We do not know the magnitude of this risk within NHS care, patient-level risk factors, or how this risk is changing over time. PICU admission can be extremely stressful for families of critically ill children, differences between PICU and neonatal care may exacerbate this. Currently when families take their babies home from the neonatal unit, there is no information available to prepare them of the potential risk of future PICU admission for their baby. Aims and objectives Understand trends in PICU admissions and length of stay of children born premature over the previous 10 years. This will highlight potential future impact on the health service of this population. Understand the risk of an individual infant needing PICU admission according to their gestation, to allow clinicians and parents to prepare for this possibility.Methods Systematic review of existing literature, examining PICU utilisation by children born premature. Cross sectional study using the national 'Paediatric Intensive Care Audit Network' (PICANet) database, to obtain admission and bed-usage data for England and Wales, over previous 10 years, for children born premature up to 2 years of age. Linkage of the National Neonatal Research Database (NNRD), the United Kingdom national database of neonatal clinical data, and PICANet. Retrospective cohort study examining PICU admissions of children born premature, and data from neonatal stay. Determine risk of PICU admission for babies of different gestations; identify risk factors. Co-design targeted infographics to help healthcare professionals counsel parents in a variety of settings.Timelines for delivery This project will form a 3 year PhD, registered at University of Leicester. Six months each for Stage 1 and Stage 2, 12 months for stage 3, 6 months for stage 4, leaving 6 months for completion of thesis. Anticipated impact and dissemination Collaborating with parents and healthcare professionals, I will co-produce infographics to help clinicians to identify babies at high risk of PICU admission, and discuss this with parents. This information will help parents and healthcare professionals understand and prepare for this risk, and take early action to avoid deterioration. Understanding changes in PICU use by children born premature will help the NHS plan for future PICU bed capacity. My project will be presented at international and national conferences, published in open access papers, and promoted by groups such as Bliss, and on social media. I will disseminate my results to primary care and health visiting services, and the infographic will be available online.

Lay abstract: Background Babies born before 37 weeks of gestation are defined as premature. They can be unwell and need support with body functions, such as breathing, in a neonatal unit. Over time, as care of women and babies has improved, more babies survive after being born prematurely than in the past. Children born premature can have ongoing health problems in the first few years of life, because their organs may not fully recover. They are more likely to become very unwell and need admission to a Paediatric Intensive Care Unit (PICU). Generally they have a higher chance of dying in PICU. It is extremely stressful for parents of children admitted to PICU, and many experience features of post-traumatic stress disorder. Differences in medical and nursing practice in PICU may add to their stress. Currently when babies leave the neonatal unit, it is not standard practice to talk to families about the risk of future PICU admissions. We do not accurately know what the risk of future PICU admission is, or how this changes depending on how premature a baby is. We also do not know whether the NHS will require more PICU beds for these children over time. Aims I aim to measure the risk of children born premature needing further PICU care - this will be used to prepare clinicians so that they can try to prevent future problems, and to create an infographic for families. Clinicians could discuss this with families so they can be better prepared. I will look at the trends in admissions to PICU of children born premature, over the last 10 years. This will help the NHS understand the future impact of more premature babies surviving, and plan the PICU services needed. Design Stage 1: Perform and publish a 'systematic review' -h; this means searching for existing studies that looked at children born premature who were admitted to PICU, then summarising what is currently known about the risk of PICU admission for these children. Stage 2: Use the national PICU database for England and Wales to identify children born premature and admitted to PICU in the first two years of life. This is called a 'cross sectional' study. I will look at: trends over 10 years in PICU admissions, number of PICU beds used, infants who have long stays (more than 28 days), number of deaths, and number of patients needing a ventilator. Stage 3: Use linked data to look at the same babies in both the national PICU and neonatal unit databases, to look at children born premature admitted to PICU in the first two years of life, over recent years. This is called a 'retrospective cohort' study. I will see if complications of premature birth, for example lung disease needing home oxygen, increase the risk of PICU admission. I will work out the risk of a baby being admitted to PICU in the first two years of life depending on how premature they were. Stage 4:Working with parents, charities, and healthcare professionals, co-produce free infographic resources for hospital and community settings, to help explain to parents the chance of their baby needing PICU admission. Patient Public Involvement I worked with Bliss and The Smallest Things, charities which support unwell and preterm babies and their families. I have run a parental advisory meeting; and meetings will continue throughout my project. Parental input has shaped my project design. DisseminationI will share my work by presenting at major conferences and publishing open-access journal articles. My infographics will be freely available online and promoted through healthcare professional networks and charities to healthcare professionals and families.

Research activity codes: 8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: REPRODUCTIVE HEALTH AND CHILDBIRTH