Following our study at 6 years, we wanted to find out how the children were getting on at the end of primary school and whether the problems we identified earlier were still present when the children were 11 years of age. We contacted all the EPICure families and asked if we could go and see the children at school again, just as we did at 6 years. We made the 11-year assessment very similar to the previous one so that the children would feel comfortable and would know what to expect.  Once again, we are delighted to report that we have a great response from the families and 219 of the children took part together with 153 of their classmates from mainstream schools so that we could compare the results between the groups of children.

This is what we found . . .


Just as we did at 6 years, we classified ‘disability’ into 4 groups – severe, moderate, mild and none:


IQ score






Unable to walk   independently





Has Cerebral Palsy   but walks independently

Impaired but with   useful vision

Wears aids and has severe   hearing loss



Minimal motor   problems but abnormal neurology

Has a squint or wears   glasses

Has normal hearing   with hearing aids



Normal mobility and   hand function

No problems

No problems


We found that moderate to severe disabilities in mobility, vision and hearing were rare (10% or less), but learning problems such as problem solving, thinking and reasoning were much more common: the EPICure children had lower IQ scores in general and 40% had scores that were moderate or severely impaired compared with 1.3% of their classmates. Overall we found that 45% of the EPICure children had a moderate or severe disability. We were pleased to find that this was almost exactly the same as at 6 years of age so these kinds of problems do not appear to have worsened over time.

Eye checks

One thing that had increased was the number of EPICure children who needed glasses or who had one eye that squinted.  This tells us it is important to get your eyes checked by an orthoptist if you have been born extremely premature.

School and learning

As we know that extremely preterm children often have difficulties with learning, we were very interested in finding out how the EPICure children were getting on in their last year of primary school.

Just as at 6 years, we found that the majority of EPICure children were in mainstream school and seemed to be coping well.  Again, we found that the EPICure children tended to better with things presented in order (sequential) compared to being asked to do several things together (simultaneous) and were less attentive when carrying out tasks.

We also carried out detailed reading and mathematics tests and found that the EPICure children had lower scores that their classmates and more often had learning difficulties in these areas. In particular, we found that the EPICure children had greatest difficulties in mathematics. As mathematics seems to be especially difficult for preterm children, some members of the EPICure team are carrying out further studies in this area to try and find ways of helping children with this at school. We also found that about 2/3 of the EPICure children needed some support in school, either from the teachers or from classroom assistants, psychologists or other health workers.  These findings were extremely useful because they help health workers and teachers in targeting areas where they may be able to help extremely preterm children at school.

Behaviour and emotions

We asked parents and teachers of all the children to tell us about their feelings and emotions and about their behaviour. We found that the EPICure children tended to have more problems in these areas than their classmates. These kinds of problems tended to be fears and worries and problems sustaining attention and focusing on tasks. We also found that some of the EPICure children had more difficulties interacting with other children and adults and that a very small number might have difficulties that are like autism. This is a new finding and we are carrying out more studies in this area before we can make any definite conclusions about this. We were very interested to find that the EPICure children were not more aggressive, delinquent or disruptive in school and most often did not have any problems that impacted on their daily life. 


As you might imagine having had breathing problems as babies, when we measured the lung function either in the focus group or in the main study, the breathing capacity was reduced overall.  However most EPICure children had results within the normal range.  We also noted that for many children the results improved when they had been given a medicine to open the airways (called a bronchodilator).  The improvement was greatest for children who had had the most severe lung problems as babies.

These findings have some important implications for extremely preterm children –

  • many more may benefit from regular inhaler medication than are receiving it – if there is coughing or wheeze on exercise or with a cold, then it might be sensible to consult your doctor
  • the combination of these results with smoking could be really problematical.  Very few of the EPICure group do smoke but ALL SHOULD AVOID SMOKING.

Figure 1:EPI11dataimage.jpg

Lung function results – normal baseline results for FEV1 are within the two dotted lines, values below -2 are poor function, and if the response to medicine in more than 12% this implies that medicine may help.  The extremely preterm group (EP) are divided in to those with BPD (effectively those who needed oxygen for the longest as babies) and those who did not, and these are compared to classmates’ results.


Although some EPICure children said they had more difficulty than their friends with physical activity, there were few other differences and the activity meter showed similar activity levels to their classmates.

Blood pressure

We noted no real differences in blood pressure between the EPICure children and their classmates but in the group who had special testing of their blood flow we noticed that measures of blood vessel stiffness were a little higher than classmates.  What this means is difficult to establish but we can look again at 19 years and see if this has continued.  This might have importance for later health monitoring.


We were interested to see if the EPICure children reacted in the same way to hot and cold as their classmates as the experience of the neonatal period might have led to changes in how EPICure children sense pain and temperature (which use the same nerves).  In fact the EPICure children were less sensitive to hot and cold and not more as we might have expected.  There was also no change in the way they behave to painful things or ask for help when they experience pain.

What does all this mean?

We were interested on how the lungs and blood vessels were developing because over the next 10 years function will improve as the body grows and develops.

Extremely preterm children need

  • to be careful to keep fit and take medicine if their chest feels tight, they wheeze or cough excessively and
  • to keep away from smoky places and NOT TO START SMOKING themselves, as this is likely to be more harmful to them than their classmates in the long term.

When we have our results form EPICure@19 this will show us how these factors influence how EPICure adults develop and help give health advice for the future.