Project overview
Aims of the research Necrotising enterocolitis (NEC) is a devastating disease of the bowel that causes babies to require intensive care treatment with some needing major surgery. Babies who survive NEC have a high incidence of significant long term health problems. I want to understand how surgeons currently decide which babies get surgery and to investigate whether better methods than are currently used can help surgeons identify which babies need surgery and when. Ultimately I aim to use this information to improve outcomes for these babies. Background Necrotising enterocolitis causes severe bowel inflammation resulting in babies becoming critically unwell. It mainly affects premature babies (who can be born as early as 22 weeks) in the first few weeks of life. Around 1000 babies per year in the UK develop NEC. A quarter of babies don't respond to intensive care treatment and require surgery to remove bowel which has died to prevent them from getting sicker. Sadly, about a third of the most unwell babies don't survive. Those that do are often left with significant long-term health problems. These include neurological disability and being left with inadequate bowel to feed normally meaning they require long-term feeding into the vein. NEC is a significant burden to families as well as health resources. Deciding which babies will benefit from surgery is challenging. Surgeons must weigh up the risks and benefits of performing major surgery on a tiny baby in the knowledge that surgery itself may cause harm. This uncertainty causes delays in performing surgery which may contribute to poor outcomes. Work I have undertaken demonstrates a link between later surgery and worse outcomes prompting my aim to explore whether performing surgery earlier may improve outcomes. To do this I need to be able to identify babies who need surgery accurately and earlier than we do at present and understand more about how surgeons determine timing of surgery currently. Design and method To investigate the best way to identify babies who need surgery for NEC and relate those to outcome I will: Identify previously reported methods of identifying babies who need surgery for NEC. This will be done through a detailed review of the existing research in this field. I will then use an existing large database of babies with NEC from 4 neonatal units (680 babies) to test the how good these methods are.I will also undertake work with surgeons to understand how they currently make decisions about surgery in babies with NEC and explore the impact of how decisions were made on clinical outcomes. Understanding how surgeons make decisions and the impact on outcomes is important for implementation of the findings of my research. Patient and public involvementNECUK (the UK family support charity for NEC), along with a parent group, have been fully involved in the conception, development and design of my proposal and strongly agree on its importance. I will meet with them regularly throughout the study to ensure that my work is acceptable and relevant to parents and patients. Representatives from BLISS, the preterm baby charity, will also attend these meetings. Dissemination Results will be disseminated at multidisciplinary meetings, peer-reviewed publication and via charity partners including on the NECUK and BLISS websites. I will give presentations at charity partner meetings alongside traditional scientific presentation and peer-reviewed journal publication, specifically targeting surgeons and neonatologists. Ultimately my findings are likely to inform future research exploring the role of better surgical decision-making in improving outcomes.