What Did We Find?
We looked at how the children were doing in several ways:
- We identified those children with disabilities and divided them into a 'severe' and 'other disability' category. This was because we thought that children with severe disability would still have severe problems in later life, whereas we couldn't be sure that the other group would. In the severe category we included children with cerebral palsy who were not likely to be mobile, children whose development was very behind what we would have expected and children with severe hearing and sight problems.
- We scored the developmental progress of each child using an up to date assessment (Bayley Scales). This gave us two scores for mental and motor development. Although the scores look like an IQ score (a score of 100 is average for the population) they are simply a description of how well a child's development has gone to date and are only moderately predictive (we think) of a child's later IQ and ability in school.
- We looked at each child's behaviour from the viewpoint of our doctor and then from the viewpoint of the parents through questionnaires. We asked how the parents were feeling and for some family details.
Half the population had none and roughly quarter had severe and other disabilities respectively. This is summarised in the diagram shown below:
The 64 children with severe disabilities had in the main cerebral palsy or other neurological problems or developmental delay, although a small number had problems in several areas.
We also found that development was slightly behind for the whole group with an average score of 85% for their motor and learning skills. Within the study, being born at 23 weeks was not worse than being born at 25 weeks for disability or development, but survival at 23 weeks was much worse than at 24 or 25 weeks, as we would have expected.
Children in the EPICure group tend to be smaller and lighter than full term children in early childhood, although most measurements fall in the normal range. For example, average weight is about 3 pounds lighter than average for the general population. Very few studies have looked at growth in later childhood, but there is a tendency to slowly catch up in other groups of premature children.
The commonest medical problems were related to the chest. About 45% of the children needed help with medicine to relieve wheeze and cough and many of these children were said to have asthma. Around 40% of the children had needed readmission to hospital after discharge again mainly for chest problems. These types of problems were commoner in children who had needed oxygen for a long time after birth.
We looked at behaviour in two ways. Firstly we assessed how the children behaved during the assessment. 1 in 3 boys and 1 in 6 girls were thought to have difficult behaviour by the assessors using a standard scale, mainly short attention span. This is not uncommon at 2.5 years of age. Parents completed the child behaviour checklist which is a commonly used series of questions. Parents scored 1 in 5 children as having a behaviour problem, again mainly related to attention, which is known to be a problem following premature birth.