December 2010

Seasonal greetings from the EPICure team!

We thought we would take the holiday period as an opportunity to update you on the progress of the EPICure Studies, as it is some time since our last newsletter.  We have all been working hard sorting through all of the information you have kindly given us and writing scientific reports of our results. 

Recent Changes

At the end of September the EPICure main office moved from Nottingham down to University College London (UCL) where Professor Marlow is now based and all correspondence will now come here.  The Studies have a new email address – epicure@ucl.ac.uk – but our website stays the same – www.epicure.ac.uk

Goodbyes: We were very sorry to say goodbye to Heather Palmer, who has managed the study since 1997 – she has done a great job and has really helped make the Studies the success they have been.
Welcomes: we were delighted that Laura McCormack joined us in November when she took over as the study manager.  She will be communicating with everyone over the next year as we set up the next study points so you may be hearing from her in the near future!  We are really pleased that she has joined the study and look forward to her working with us.

A big thanks also to Bliss, the premature baby charity, who have helped us design and print our own greetings card!

So where have we got to with the two studies?

EPICure – the first study

Time is flying on as the children born in 1995 grow up – the oldest children will be 15 next year!  
Thanks to all of you that took part in our assessment at 11 years.  Our scientific reports from this assessment are now almost complete, although we are still waiting for acceptance from some of the journals.  This was a really big assessment and it gathered a lot of interest from doctors and researchers all around the world, from places as far apart as Japan and New Zealand, Brazil and Canada. Thanks to all your help, EPICure continues to be the most important study of extremely premature babies in the world! 

Most importantly the information from EPICure is now used regularly to form the basis for telling parents about the issues for new babies who are born at extremely premature.  It has formed the basis for advice to Government, and to Professionals and forms the basis for National Guidance on caring for babies around the time of birth. 

EPICure is such an important study because we identified all of the children born in the UK and Ireland from March to December 1995, and to see and assess most of the children through to 11 years – this is the first time this has ever been done so comprehensively for such a big group.  As a result we are learning a lot about what it means to be born early understanding better the important causes of the problems we see in some children.

At 11 years, we saw 219 children from the original 1995 study group, together with 153 of their classmates.  We collected information on a wide range of issues, from learning and behaviour to how well the blood vessels work.

So what were the main findings from the 11-year study?

Firstly, although we are very careful to look at areas where extremely premature children may have problems, it is really important to say that most children do not have serious problems; we were impressed with how well children were growing up and developing. We were also impressed with how settled most children were in school and how content and happy they were. Our aim was to find out what kinds of problems extremely premature children may have later in life so that we can work out the best ways for helping them overcome them – this is the over-riding challenge of EPICure. We looked at how the children were doing the following areas:

Learning and school:  We tend to describe problems in terms of the areas of difficulty or disability that children have.  We found that the most common difficulties are in the field of learning and thinking and that these impact on the support children needed at school.  We found that the number of children with learning difficulties was much the same as when we assessed the children at 6 years of age and that at 11 years around 2/3 of children needed some extra help in school.  We found that 87% were in mainstream school and most of the extra help was needed in learning, for example, in reading and maths.

Given the high number of children with learning needs it is important that teachers understand more about the problems that premature children face (not just the extremely premature ones) and we are analysing the results of a survey to see what teachers need to know to see if we can improve how children do at school.   We did find that children who go to school early because their birthday is in the summer and so end up in the year above where they would have been if they’d been born at the right time, needed more help in the classroom, however with that extra help they were doing as well as the older children in the year. Perhaps for some children delaying school entry might be helpful; we are hoping to look into this further in the future. 

Behaviour:  Many of you will remember the telephone interview you kindly had with one of the study team.  This has been very helpful in identifying the types of behaviour problems that may be faced by premature children.  We found that, most frequently, children were inattentive – having difficulty maintaining their attention – but they were have similar levels of over-activity and ‘naughty’ behaviour as their classmates.  EPICure children also tended to be quieter and worry more.  A small number of children behaved rather like autistic children, which is worrying, but these children all had other learning or developmental problems that, in part, explain this behaviour and make the usual ways to assess behaviour difficult to interpret in EPICure children.  Very few studies have managed to do studies like this so again we want to say a really big thank you to all the mums, dads and the teachers who helped us.

Breathing and activity:  All children helped us by letting us assess their lung function by playing fun breathing games.  We found that the lung function was less good in EPICure children than classmates and this related to how bad breathing problems were in the period after birth.  At 11 years, this was done is a very sophisticated way but gave us similar results to those in the simple breathing tests we did at 6 years/ We think that premature children need their breathing function assessed carefully and some will benefit from inhalers treatments.

A small group of 50 children helped us by coming into the Institute of Child Health in London for really detailed breathing tests. The results of these tests told us much more about the nature of the breathing problems we found.  This group also wore activity monitors to see if the EPICure children were as active as their classmates, given these differences.  We were delighted to find that they were just as active in their daily life!

Blood pressure:  The children helped us by letting us measure their blood pressure and how fast the blood was flowing in their circulation.  This showed us only small differences in blood pressure from their classmates but also that this was due to some differences in the way small blood vessels function compared to their classmates.  It is difficult to know what this will mean for the children, as this is an EPICure ‘first’ and we hope to check it again when the EPICure teenagers are more grown up

Sensation:  One further study that is also a ‘first’ for the EPICure study was carried out for the 50 teenagers who came to London for detailed lung assessment.  In this we looked at the ability to sense “pain”.  Of course we can’t hurt people during the research so we used warm and cool sensations, which don’t hurt but which use the same nerve fibres as painful stimuli so we can measure them in the same way.  This intriguingly showed us that, even 11 years later, EPICure children are less sensitive to temperature (and therefore pain) and those who we think had the worst pain (from an operation as a baby) are even less sensitive. This has really important messages for the way in which we treat babies in the neonatal unit and we need to work out better ways to reduce the pain and discomfort that babies experience.

Putting it all together – We have much work to do but we hope you agree that we have a lot of new information about what it means to be born so early and some important signs as to where we need to go with new research studies.  And most importantly, we hope you agree that the whole study has been helpful in providing information that we can use to help other parents in the same position as the EPICure parents were back in 1995, and has given us important information we can use to develop our care for extremely preterm babies in the future.

What next?

Having carried out such a major assessment at 11 years you will be pleased to know that we do not need to so such a major assessment again for some time.  What we would very much like to know is how the EPICure young people have got on at school and how contented they are – to do this we would like to write to you next year to find out just that.  

Of course because they are getting older we would also like to ask this special group of young people if we may have their permission to contact them directly as they get older, We are planning an assessment when they are 19-20 years so we can find out how things are progressing. We will be writing to you in the future about this.

Thank you all very much for your help and support. 

EPICure 2 – the new study

Having such wonderful support from the parents and children in the first study, we wanted to find out whether things had changed over the 10 years between the end of the first study and 2006.  We did this study in a slightly different way, as we wanted to have more information about what happened to mothers before birth and we wanted to extend the study to include babies born at 26 weeks of gestation.  

This study was therefore carried out just in England, using a national scheme for recording information around the time of birth (called CEMACE) to collect more details about births between 22 and 26 weeks of gestation.  Information on what happened to the babies after birth and before going home was collected in the same way as before.  It has proved more difficult to get the information ready for publication so we are still working on this but we hope to have the first publications out over the next few months.

What has the new newborn study found so far?

There were two major findings:
Firstly, that survival rates had increased for babies born at 24 and 25 weeks of gestation since 1995.  This is shown in the graph.  Please note that although it looks as if things are better at 22 and 23 weeks, the numbers of babies who survive at these gestations is still very small and it is difficult to be certain that things are in fact getting better as these differences could be due to chance.

Secondly, for reasons we are not yet sure about there has been a dramatic rise of about 30% in the number of babies admitted to neonatal units at 22-25 weeks in England between the two studies (one of the reasons we have delayed publication is the need to confirm that this is correct, as it is such an unexpected finding).

Other findings seem to indicate that early care has improved and that some items that were associated with poor outcomes in 1995, such as being cold on admission to NICU, are less frequent now, leading to the hope that outcomes might be improved. However the number of babies going home from hospital who had important early complications such as abnormal brain ultrasound scans, prolonged need for additional oxygen or who needed laser treatment for their eyes has not decreased, so careful follow up will be needed to be certain of any changes in the number of children with later problems.

The follow up study:
Once we had identified everyone we set about trying to see as many as possible at follow up when they were about 3 years of age.  Sadly because of changes in the way research is managed in the UK this proved very difficult and led to a huge amount of red tape, which slowed everything down very much.  As a result we did not manage to see everyone before they became too old for the tests we were using.  However the information we do have is really useful and we have been working very hard to analyse the information and we will have the first publications out in the New Year. Once these are published we will write to you again to tell you about them.

What happens next?

We intend to invite all the parents and children to take part in the next phase of the study, which we will carry out at primary school (in a similar way to that which we did for the original study at 6 years).  This is much more informative as the children are older and the range of tests and their implications for the future are much better.  This will be quite a job, as there are over 1000 EPICure 2 children and we need to see you all if possible! We have applied for research funds to allow us to do this and will let you know when this is available. Your help with this would be greatly appreciated and crucial to making EPICure 2 as successful as the first study.

THANK YOU ALL WHO HAVE CONTRIBUTED SO FAR

We do hope you feel able to continue in the study even if we did not manage to see you this time around. 
All in the EPICure team wish you all a great Holiday Season. 
We look forward to being back in touch in 2011 and thanks for your continuing support.

Neil Marlow 
Kate Costeloe
Sam Johnson
Laura McCormack