What Did We Find?
Overall we saw 241 of the EPICure group which was just over 80% of those who were in the UK and Ireland at the time of the assessments. The age range was 62-87 months with an average of 6 years 4 months. This is a very high follow up rate - what a fantastic response by our families - but we hope we could see nearer to all of the children next time.
Firstly we looked at what we termed disability in a similar way to how we had done at 2.5 years. Using conventional ways of classifying this, compared to our findings at 2.5 years we found that a similar number of children were free of disability (just under half) and that just under a quarter had moderate or severe problems.
Over 86% of those who had the worst problems at 2.5 years still had major problems at 6 years. We also found a similar number of children with cerebral palsy but in only half of these was the disability interfering badly with their day-to-day activity. The results are summarised in the graph below:
One of the problems of trying to evaluate results such as these is that most of the problems faced by extremely premature children as they grow up relate to learning and their ability in the classroom. The better comparison to do is with their classmates. This is how BBC Panorama reported the results and is considered by Professor Dieter Wolke, the psychologist working on the study, to be the correct way of looking at these results. When we do this, however, the classmates scored better than average in tests, which often happens with tests that were drawn up 20 years ago.
When we re-do the classification using these better scores as reference, just over 4-in-10 EPICure children are doing significantly worse than classmates (see Figure 2) compared to 2-in-20 using the conventional test results (as in Figure 1).
Once again boys seemed to fare much worse than girls, being more prone to disability and having lower scores than girls. We cannot explain this difference but it has been found throughout the study from its first results in the period after birth.
We only saw small differences between the children born at 25 weeks and those born at 24 or 23 weeks that were not really clinically significant. When we looked at the detailed results of the intelligence test we did the children were achieving slightly less well than we would have predicted. It appears that being born extremely early seems to make a difference to children's ability to process a lot of information together. Doing tests in sequence they did better than expected but trying to do things at the same time as other tasks (simultaneously) revealed problems. Boys and girls had the same profiles here.
We also did a lot of tests to look at the fine detail of children's hand-eye skills and of their attention (the NEPSY tests). These were, as we would have predicted, lower in the EPICure children and were responsible for some of the extra difficulties children were having.
We have looked at some of the growth outcomes as we were concerned about the height and weight of the children at 2.5 years. The children haven't shown much sign of catching up with their peers but their growth has been at a normal rate for the past 3-4 years. Despite this we still know very little about growth during puberty and we would expect some catch up growth at that time.
But...despite all these negative comments, it is important to stress that most of the children were doing reasonably well at school, keeping up in the classroom and had normal behaviour patterns.
This is something the recent press interest doesn't really bring out. Many parents have written to us or e-mailed us to point this out and it is something that is very important for parents and professionals to keep in mind.
We are really excited by the results we have to date and they help us to think again about the aspects of our care that we need to target to help improve the outcome for children in the future. We have been looking hard at the information that we collected in the Neonatal Nursery, at things that happened both before and after birth. We can see that some patterns of problems, particularly cerebral palsy and motor problems, may reduce if we can alter some aspects of our care and ensure that all mothers receive antenatal treatment with steroids to help mature and prepare the baby to be born.
Once again we could not have obtained this information without the help of all the children and their parents and we must thank them for their continued involvement in the study. The strength of our study is that we have included all babies born in Britain and Ireland and thus it really shows the true picture for all extremely premature babies across the country.
The BBC Panorama programme helped highlight our findings and the full transcript of the programme can be seen at their website.