core outcomes

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 COIN project has now identified a core outcome set for neonatal care, but future work is planned to work out the best way to report these outcomes. We need to define how and when these outcomes are measured to maximise the return seen from future neonatal research.

AIM

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

• Researchers

These will form a Core Outcome Set which should be collected whenever research is done with newborn babies.  

research overview

First looked at research that had already been done to find which outcomes were being used in neonatal randomised controlled trials. We also looked at research where patients, parents and healthcare professionals were asked which outcomes they thought were important.

This gave us a long list of different outcomes. The next step was then to work out which ones were most important. To do this we used something called a Delphi method. The Delphi method used an online survey to ask lots of different people to rate how important each outcome was.  

The COIN project was led by a steering group of parents, patients, nurses, doctors and academics.

It was essential that as many people as possible, with as many different experiences as possible, took part in this Delphi. This made sure that the outcomes that form the Core Outcome Set represented the views of parents, patients doctors, nurses and other health professionals.

We published the protocol for the COIN project (a detailed description of how a core outcome set for neonatology was developed) in the medical journal BMJ Paediatric Open.

Research importance

No one had asked large groups of parents and patients which neonatal outcomes were most important to them, which meant that most neonatal research did not measure outcomes that are important to parents and patients. The COIN project involved these groups to make sure that future neonatal research collects outcomes that are important.  

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.

PROGRESS

The COIN report (including the neonatal core outcome set) has been published and is available here.

Future work is planned to further define the outcomes in the core outcome set to further improve neonatal research.

Get Involved

The Delphi project has now closed, we will be holding the final consensus meeting before publishing our results. 

If you would like to be kept updated as this work progresses please get in touch  - we will update you with more details of the Core Outcome Set as it is developed.