EPICure 2 @11

This part of EPICure 2 evaluated survival after birth at extremely low gestational ages (22 to 26 weeks of gestation) and described what happened to the babies when they were first in hospital.

We first studied the occurrence of late terminations of pregnancy between 22 and 26 weeks of gestation and showed that the majority of these are carried out because the fetus has a malformation (See Draper et al BJOG 2012).

We showed that the numbers of births at low gestations had risen by 44% between 1995 and 2006 and that this was accompanied by a 13% increase in survival, particularly after birth at 24 and 25 weeks of gestation (see Costeloe et al BMJ 2012).

In a study of the influence of the type hospital in which you were born, we showed that being born in a hospital with full intensive care facilities improved survival and that survival was highest in the busiest intensive care services. (see Marlow et al ADC 2014)

This part of EPICure2 studied 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.

EPICure2@11 is the latest phase of EPICure2 – the study of health and development following birth at 26 weeks of gestation or less in 2006 across England.  As in the original 1995 EPICure Study, we want to find out how the children born in 2006 are growing up now they are around 11 years of age. The Medical Research Council again funded this exciting project.

EPICure2 identified over 1000 children who went home from neonatal units in that year.  It was difficult for us to attempt to meet all the children, so we contacted only those who were born in the London area and around the Midlands to invite them to take part in an assessment. We carried on with appointments until we had seen 200 children – 1-in-5 of the original group. This was large enough a population to allow us to work out what had happened to these children and compare them with what we had found in the original EPICure cohort.

As before we had great help from the Schools and got the assessments completed in good time. We recruited 143 comparison children born at full terms alongside the EPICure 2 children. Thanks so much to all for you for your support.

We assessed as before learning and memory alongside general health and development and have started the process of analysis and write up. Papers will be coming out over the next few months as the journals accept them and we will post links to them on this site.

The most important messages that have come from the study so far are that although survival has improved other outcomes seem to be much as they were for the original EPICure cohort born in 1995. Although disappointing for us and parents alike, this was perhaps expected as it takes many years to drive improvements in practice and deliver the improved very long-term outcomes we want. We have seen that changes in the rate of important problems like cerebral palsy seem to lag behind improvements in survival for more mature infants and only by continuing to refine our care will we deliver these. We know that survival has continued to improve so we will have to carry out EPICure3 to determine the improved long-term outcomes we all want to see.