EPICure2 - outcome at 2-3 years
This part of EPICure 2 studies the development of children after extremely preterm birth. We followed children at 2 years of age by parent-completion questionnaire and then 12 months later with a formal assessment.
The parent questionnaire at 2 years was returned by 523 parents (just over 50%). We were particularly interested in development and behaviour. Parents told us about the stages of development and language and completed a behavioural questionnaire – the modified checklist for autism or m-CHAT. This was not because we think extremely preterm children have autism but to see whether it could be used in such a group of infants as is often advocated. In fact we found that because development in the first 2-3 years is much slower in extremely preterm child many more children screen positive than would be useful and it probably isn’t the best test to use (see Moore et al Dev Med Child Neurol 2012).
We managed to see 576 children at around 3 years. Part of the reason this was so low was due to the changes in research permissions in England, making it really difficult to arrange appointments in hospital, which we had done previously in EPICure. We also had problems in tracing families who had moved. Although these problems are now to some extent resolved we had to stop seeing children because the test we were using was not useful for older children. Hospitals gave us information on a further proportion so that in the end we had information on 75% of children.
Before we analysed the information that had been collected we had to work out how the developmental test scores related to the older test used in EPICure. We worked out a way so that the test scores in 2006 born children could be compared to those in 1995 – we have published this as well (Moore et al J Pediatr 2012)
In the third paper from the outcome study we describe changes from what was found at a similar age for the EPICure babies born in 1995. We were able to make some important observations:
- Firstly, in contrast to the 1995 study where we saw few differences between babies born at 23, 24 or 25 weeks, we can now see slightly better outcomes for babies born at 24 and 25 weeks (figure 1).
- Overall and particularly after birth at 24 and 25 weeks of gestation we have seen significantly more babies who do not have problems at follow up – overall the proportion has risen by 11%, from 23% to 34% - and developmental scores appear to have increased, meaning proportionately fewer children may developmental problems as preschoolers.
- However it is the case that the proportion of babies who have the most serious problems is similar in in both studies and because the number of babies receiving care has risen that means that the number of children with problems related to their prematurity also has risen. This is very important information as services need to be planned to be able to provide the support that the children and you, their parents, need.
Figure 1: proportion with severe, moderate and mild impairments at follow up at an average of 3 years by gestational week at birth (percent with severe impairment is shown)
Figure 2: numbers of children who survived with severe disability, other disability or no disability in 1995 compared to 2006; the number of babies admitted for care rose by 44% between the two time points, although more survive without disability, the number of children with severe disability has also risen in 2006 births.