EPICure: population-based studies of survival and later health status of infants of 25 weeks gestation or less
Lead Research Organisation:
University College London
Department Name: Maternal & Fetal Medicine
Abstract
EPICure is a population study of babies born at borderline viability (25 weeks of gestation or less) in the UK and Ireland. The surviving children have been assessed at 2.5 and 6 years. Only 26% of liveborn babies survived to go home and one in four of these have a significant disability; cognitive scores for the whole cohort are 25 IQ points below their classmates and many have chest problems. This application includes an assessment of the EPICure cohort focussing on psychological, psychiatric and respiratory status at 10 years as they enter adolescence. It is important that this unique cohort is followed through adolescence into adult life better to understand their problems, both to plan appropriate services to support their ongoing needs and to inform those caring for the women and newborn babies today of important long term problems that they may face.
Some question the validity of using 1995 EPICure data to prognosticate for babies currently in our nurseries, but we believe that while survival might have increased a little, the proportion of children with severe disability will not have changed. To show this we will recruit a new cohort of babies born in England in 2006 at 25 weeks or less. The data collection around birth will be more detailed than in 1995 so that we can assess the impact on outcome of different obstetric complications, of medical interventions and the attitude of the professionals and compare outcome to births at 26 weeks of gestation, an age when intensive care is routinely provided.
Using new methodology, we will study early lung function in a number of the children to help us understand the mechanisms leading to later respiratory problems and we will perform a full assessment of all the children at 2.5 years. If, as we anticipate, disability rates have not changed, this will confirm the relevance of continued follow-up of the 1995 cohort.
This information will help parents and professionals in their joint decision making and inform public debate about the ethics and economics of providing intensive care at borderline viability.
Some question the validity of using 1995 EPICure data to prognosticate for babies currently in our nurseries, but we believe that while survival might have increased a little, the proportion of children with severe disability will not have changed. To show this we will recruit a new cohort of babies born in England in 2006 at 25 weeks or less. The data collection around birth will be more detailed than in 1995 so that we can assess the impact on outcome of different obstetric complications, of medical interventions and the attitude of the professionals and compare outcome to births at 26 weeks of gestation, an age when intensive care is routinely provided.
Using new methodology, we will study early lung function in a number of the children to help us understand the mechanisms leading to later respiratory problems and we will perform a full assessment of all the children at 2.5 years. If, as we anticipate, disability rates have not changed, this will confirm the relevance of continued follow-up of the 1995 cohort.
This information will help parents and professionals in their joint decision making and inform public debate about the ethics and economics of providing intensive care at borderline viability.
Technical Summary
Birth at borderline viability (25 weeks gestation or less) poses great clinical and ethical challenges. Death and disability after premature birth become more common at low gestations. Clinical decisions around the time of birth need to be based on reliable contemporary evidence from an appropriate population. The EPICure study apart, there is a paucity of data concerning the long term consequences for babies born at borderline viability.
The EPICure Study recruited a cohort of 308 surviving children from 1289 livebirths before 26 weeks gestation in 1995 across the whole of the UK and Ireland. Impairment-free survival is low, particularly at lower gestational ages. Over 40% have serious cognitive impairment and many outcomes are related to low IQ suggesting underlying global cerebral dysfunction. The baby?s early condition and the use of ante-natal steroids are important predictors of outcome but we have no other data to assess whether outcome is independent of, or is influenced by, staff attitudes or other medical interventions at that time. Although survival may have risen since 1995 but there is no information concerning the risk of disability.
This application comprises five studies involving the established cohort at 10 years, to study the developing pattern of health problems, focussed on their psychological, psychiatric and respiratory status, and also the recruitment, in 2006, of a new cohort including births at 26 weeks that will provide new data to understand the importance of factors around the time of birth and of the pattern of service delivery on outcomes. Taking advantage of new methods of assessing lung function, we will study a sub-set to the age of 21 months to elucidate mechanisms underlying developing lung pathology and we will study the whole population at 2.5 years to identify changes in outcome since 1995. We believe this will confirm static disability rates in survivors and validate the relevance to contemporary practice of following the 1995 cohort into adult life.
The proposal brings together senior staff from 4 academic institutions (Nottingham and Leicester Universities, the Institute of Child Health and Queen Mary, University of London), all with experience and expertise in the study area and with established strong academic links. The results of this programme of work will provide internationally unique epidemiological, clinical and physiological data with which to understand the context of disability at borderline viability and to underpin an area of practice of great public interest.
The EPICure Study recruited a cohort of 308 surviving children from 1289 livebirths before 26 weeks gestation in 1995 across the whole of the UK and Ireland. Impairment-free survival is low, particularly at lower gestational ages. Over 40% have serious cognitive impairment and many outcomes are related to low IQ suggesting underlying global cerebral dysfunction. The baby?s early condition and the use of ante-natal steroids are important predictors of outcome but we have no other data to assess whether outcome is independent of, or is influenced by, staff attitudes or other medical interventions at that time. Although survival may have risen since 1995 but there is no information concerning the risk of disability.
This application comprises five studies involving the established cohort at 10 years, to study the developing pattern of health problems, focussed on their psychological, psychiatric and respiratory status, and also the recruitment, in 2006, of a new cohort including births at 26 weeks that will provide new data to understand the importance of factors around the time of birth and of the pattern of service delivery on outcomes. Taking advantage of new methods of assessing lung function, we will study a sub-set to the age of 21 months to elucidate mechanisms underlying developing lung pathology and we will study the whole population at 2.5 years to identify changes in outcome since 1995. We believe this will confirm static disability rates in survivors and validate the relevance to contemporary practice of following the 1995 cohort into adult life.
The proposal brings together senior staff from 4 academic institutions (Nottingham and Leicester Universities, the Institute of Child Health and Queen Mary, University of London), all with experience and expertise in the study area and with established strong academic links. The results of this programme of work will provide internationally unique epidemiological, clinical and physiological data with which to understand the context of disability at borderline viability and to underpin an area of practice of great public interest.
