EPICure@19 checks health of premature babies born 19 years ago

EPICure@19 checks health of premature babies born 19 years ago

EPICure, a series of longitudinal studies following the health of children who were born extremely prematurely, is announcing a new survey to assess the health of participants born 19 years ago.

The EPICure studies are long term, population-based studies into the effect of extreme preterm birth on developmental outcomes across the lifespan and involve a national cohort of births. The studies began to follow children born between 22 and 25 weeks of gestation in the UK and Ireland back in 1995. These children were followed up at 2, 5, 6, 11 and 16 years of age, with EPICure@19 set to be the next phase of this study.

For EPICure@19 every member of the cohort who turns 19 during the next 15 months is being invited to take part in the new study, which is based at UCL and funded by the Medical Research Council (MRC).

In this exciting new study the EPICure team aims to assess the medical and social outcomes for this important group of young people, a unique cohort of births that has helped increase our understanding of the effects of birth and medical care during the newborn period on growth and development.

This new study will enable us to understand how premature babies are affected by the changes that occur over the teenage years.

Professor Neil Marlow, UCL Institute for Women’s Health

The announcement of the new study coincides with World Prematurity Day (WPD) on November 17th. WPD brings attention to the successes and challenges of caring for premature babies across the world. Although premature birth (classed as birth before 37 weeks of gestation) is still associated with around half of the four million baby deaths worldwide each year, there have been huge strides in understanding and treating the effects of preterm birth, with significant reductions in mortality. Care is now directed towards minimising the long-term effects, particularly for babies born at extremely low gestations (<27 weeks).

A second group of babies born in 2006 at 22-26 weeks of gestation forms EPICure2. Last year, a study comparing these two birth cohorts demonstrated that although the number of infants surviving following extremely preterm birth is increasing, and the number of children without disabilities has risen by about 11 per cent. However, the proportion of survivors with impairments has remained largely unchanged.

Recent studies from research groups in Europe, Australia, USA and Canada have also shown similar findings in early childhood, but few studies have investigated the later outcomes of extremely preterm birth in adulthood. Thus the associated health risks later in life are not well understood.

Some studies have suggested that in childhood and early adolescence the difficulties experienced following preterm birth may lessen with time, while others suggest that these young people continue to be at risk of psychological and social problems into adulthood. EPICure@19 aims to help clarify these questions.

By examining this population again at 19 years, EPICure researchers hope to identify whether the difficulties and health problems experienced during childhood have persisted into adulthood and, as a group, whether they are more prone to developing other chronic illnesses, psychological or social behavioural problems later in life. The information from EPICure@19 will help identify the support needs of these children into young adulthood and permit better educational, psychological and medical support planning.

The EPICure studies are funded by the MRC and directed by Professor Neil Marlow, consultant neonatologist at UCL’s Institute for Women’s Health, in collaboration with colleagues across the UK.

"EPICure has helped us understand the impact of prematurity on health and development over childhood and pointed to where we need to improve care and focus research," says Professor Marlow. "This new study will, for the first time, allow us to understand the effect of the changes that occur over the teenage years in the areas we have studied and allow us to celebrate the successes of this unique group of people."

BLISS, the premature baby charity, has been closely associated with EPICure since it started. The Charity Innovations Manager, Zoe Chivers, says: "Bliss is delighted to have been involved with the EPICure study since 1995 and continue our support as it looks at the long-term outcomes of extremely premature babies into adulthood. The long-term outcomes of these babies are incredibly important to inform healthcare and education services and to ensure the right support is provided at all times."