results show that babies born extremely prematurely may have a wide
range of cognitive or physical impairment
The follow-up results of a major study1 into babies born extremely prematurely published today in the New England Journal of Medicine conclude that cognitive and neurologic impairment is common although the levels vary widely.
EPICure is the first study in the UK that has followed a group of babies born extremely prematurely at 25 or fewer weeks gestation in 1995 and assessed them at 2½ and 6½ years of age.
The 2½ year assessment published in 20002 showed that of the 302 surviving babies available for follow-up, 50% had no disabilities, 25% had some level of disability and 25% had severe disability. This new element of EPICure followed 241 of the surviving children at early school age and assessed them at an average age of six years and four months. Very detailed medical and psychological testing took place and 160 classmates born at full term served as a comparison group rather than using standardized controls, which are based on children assessed in the 1970s.
The results indicated that there was a high rate of disability in this group of babies. In particular learning disability could be detected more accurately than at the earlier assessment. 20% of the children assessed had no problems. 22% had severe disability such as severe cerebral palsy (children not walking) , very low cognitive scores, blindness or profound deafness. The proportion of children with cerebral palsy with severe or moderate motor disability was 12%. 24% had moderate disability such as cerebral palsy (but walking), IQ/cognitive scores in the special needs range, lesser degrees of visual or hearing impairment. 34% had milder problems such as wearing glasses, a squint or low/normal cognitive scores.
The study also showed that boys had a greater risk of severe disability and lower scores for cognitive function than girls, which supports the concept that male sex is an important biologic risk factor in extremely preterm infants.
Neil Marlow, Professor of Neonatal Medicine at University of Nottingham and joint author of the paper commented, "the strength of this study it is uniqueness and its completeness enabling us to marry up all the data from birth to childhood. These results show that the majority of children do not have a serious physical disability, ie do not have cerebral palsy, blindness or deafness and despite the high incidence of learning difficulties, half are doing reasonably well and keeping up with their classmates."
The findings indicate that many extremely premature children and their families require psychological and educational support throughout childhood. This will further inform the debate on the best treatment of babies born at the limits of viability, which is currently taking place in most Western countries.
BLISS, the premature baby charity, in association with the Healthcare Foundation, was a major funder of this study. "This is an important study, said Rob Williams, BLISS Chief Executive, "the results of which will give parents some guidance as to the possible outcome for this small group of babies. They may well affect difficult decisions that have to be made about continuing treatment. It is vital to be aware of the potential outcomes of neonatal intensive care on these very small and vulnerable babies which is why BLISS has been a major funder of EPICure. However, babies born at this early gestation age represent a very small proportion of the 40,000 babies born prematurely and the fact that they survived at all is a tribute to the improved knowledge and continuing dedication of the neonatal team and parents."
1 Marlow N, Wolke D, Bracewell M, Samara M. Neurologic and developmental disability at 6 years of age following extremely preterm birth. New England Journal of Medicine 2005; 352: 9-19
See also: NEJM Editorial: Extreme Prematurity - The Continuing Dilemma, Vohr B.R., Allen M, New England Journal of Medicine 2005, 352: 71
2 Wood NS, Marlow N, Costeloe K, Gibson AT, Wilkinson AR, Neurologic and developmental disability after extremely premature birth. N Engl J Med 2000; 343:378-84
1. EPICure - the EPICure study was established in 1995 to determine the chances of survival and later health status by following-up children who were born in the United Kingdom and Ireland at less than 26 weeks gestational age during a 10 month period in that year. The study reported outcomes in the newborn period and to 2½ years of age for survivors in 2000. The completeness of the population and the assessments make this a unique study. The EPICure website is still being completed but more information, including links to the original papers, may be obtained from www.nottingham.ac.uk/human-development/EPICure
The EPICure investigators Group comprises researchers from all over the UK, led by Professor Kate Costeloe, Dr Alan Gibson and Professor Neil Marlow. Professor Dieter Wolke and Professor Marlow were jointly responsible for the 6 year assessments. Professor Wolke works in the Department of Perinatal and Paediatric Epidemiology, University of Bristol and is Director of the Jacobs Foundation, Zurich, Switzerland. Professor Marlow is based in the School of Human Development, University of Nottingham.
2. BLISS - the premature baby charity, was founded in 1979 and is dedicated to making sure that more babies born prematurely or sick in the UK survive and that each one has the best quality of life. It seeks to achieve this through supporting new developments and innovations in care; supporting parents and carers of premature and sick newborn babies; and campaigning for improvements in neonatal care. www.bliss.org.uk