The COIN project: Core Outcomes In Neonatology, is looking at the outcomes of neonatal care. An outcome is something like 'going home on oxygen' or 'needing surgery for necrotising enterocolitis'. The COIN project will involve parents, patients and health professionals working together to work out which outcomes are the most important to measure in neonatal care.
The aim of the COIN project is to work out which outcomes of neonatal care are most important to:
- The parents of babies needing neonatal care
- Neonatal patients themselves (once they are old enough to express their opinions)
- Doctors, nurses and other health professionals who provide this neonatal care
These will form a Core Outcome Set which should be collected whenever research is done with newborn babies.
First we will look at research that has already been done to find which outcomes are already being used in neonatal randomised controlled trials. We will also look at research where patients, parents and healthcare professionals were asked which outcomes they think are important.
This will give us a long list of different outcomes. The next step will be to work out which ones are most important. To do this we will use something called a Delphi method. A Delphi method uses an online survey to ask lots of different people to rate how important each outcome is.
The COIN project is led by a steering group of parents, patients, nurses, doctors and academics.
It is essential that as many people as possible, with as many different experiences as possible, take part in this Delphi. This will make sure that the outcomes that form the Core Outcome Set represent the views of parents, patients doctors, nurses and other health professionals. If you would like to take part in the Delphi process to help develop a neonatal Core Outcome Set please get in touch below.
We have published the protocol for the COIN project (a detailed description of how a core outcome set for neonatology will be developed) in the medical journal BMJ Paediatric Open.
No one has asked large groups of parents and patients which neonatal outcomes are most important to them, this means that most neonatal research probably does not measure outcomes that are important to parents and patients. The COIN project will involve these groups to make sure that future neonatal research collects outcomes that are important to them, as well as to researchers, doctors and nurses.
At the moment different neonatal research studies measure different outcomes in different ways. This often means that when doctors or nurses want to compare different research to work out which treatment is best for a baby, they can't. For example one research study looking at different kinds of milk might measure the outcome 'how many babies are breastfed when discharged home' while another study might measure the outcome 'average weight gained per day' - it is impossible to compare these two outcomes. The COIN project will let researchers know which outcomes are most important so that all studies can measure them.
We are running the Delphi part of this project at the moment.
We would like to hear from you if you have any experience of neonatal care (for example if you are the parent or carer of a baby that required neonatal care, needed neonatal care yourself or are a health professional involved in neonatal care) - we will update you with more details of the Core Outcome Set as it is developed.