EPICure@19 Official launch marked by UCL press release
New study 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 (University College London) 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.
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 (
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.”
Georgina Watson has been one of the EPICure ‘children’ since the study started in 1995.
In her own words: “When recently looking back at recordings of my early years, I feel quite amazed. This was the first time I had actually sat and watched these videos. There was a realisation of how unwell I was whilst watching myself weighing 1lb 6oz, and of the mammoth challenges experienced by everyone involved and how proud I feel to be part of the study.
“Our local evening press ran a recent story of a four month premature baby boy weighing 1 lb 6oz, it reported that 20 years ago he wouldn’t have been able to survive, but it did happen and it happened to me. It’s quite remarkable what EPICure has done and what it will continue to do.
“I believe that the research and results from EPICure@19 will make interesting reading. Are we, as premature babies, any different from a full term baby? Why was I a survivor and so many others weren’t? I sincerely hope that continued funding and research will find the answer. One small step for me, and together, one giant leap for babies around the world.”
Georgina’s parents added: “EPICure has been part of our lives for the past 18 years and through that time we have supported, and been supported by, the programme. EPICure@19 allows the opportunity for us, as parents, to further support the research into the effects of premature birth. Our hope is that the future health and wellbeing of all premature children is improved, that the education system supports a greater awareness and understanding of their difficulties and provides the necessary resources to allow every child to achieve their full potential.”
Stephen Barnes’ daughter, Lee-Ann, was born at 24 weeks in June 1995 and has been part of the EPICure studies ever since.
He said:“Lee-Ann and I are really looking forward to the study to meet other families that have also had premature babies and have been through similar circumstances and problems as we have. I feel that meeting others who survived prematurity in 1995 will be a very emotional and gelling experience that is a credit to the NHS in supporting babies in the UK.
“In my experience premature babies are labelled with known issues, for example cerebral palsy and autism, that sometimes do not lead to the correct aid or treatment for our special sons and daughters.
“My biggest expectation is to gain meaningful advice and more appropriate recommendations for Lee-Ann that will help us to overcome her difficulties and support her in adult life. My view is that to identify these babies of 1995 and 2006 as ’extremely premature’ from a health system perspective would open more doors to all available treatments and support, both after birth and later in adult life.”
Ellie Campbell and her mother Fran, also from the EPICure 1995 survivors, give us their perspective. Ellie said: “It personally means a lot to me to be an EPICure@19 participant as I think it’s incredibly important to try to give something back to an organisation that conducts such vital research. More importantly, with my story, I hope to give people hope and let parents with babies born at a similar time as I was – 25 weeks - know what they may expect in the years to come.
“Furthermore, as I am going to be an aunt soon, my perspective on pregnancy has changed slightly as I realise how I would feel if my niece/nephew was to be born prematurely. I think that EPICure research is incredibly important and am proud to take part in it due to the amount of people it will go on to help.
“I don’t have any specific expectations of the forthcoming EPICure@19 study, but I would imagine that it will reveal that there any no major differences between myself and someone born at full term – 40 weeks.”
Fran said: “In the early days, having a very premature baby was very stressful. You were concerned about the day to day - whether they were eating enough and growing properly. Also, with other children in the house, we wanted to make sure that Ellie’s sister and brothers were not impacted upon. As a result, virtually from the time she came home she was 'dragged' (not literally) to football matches, swimming lessons etc. And as she grew up it has virtually been forgotten that she was so premature because she is a typical 18 year old.
“With regards to the study, if what we have learned can be shared to help others at a time when families feel very vulnerable I am happy to do so. I have been reassured that the care Ellie received at birth, the on-going care she received and my bloody mindedness to breast feed and not treat her as 'special' has been worthwhile.
“The EPICure research, I believe, is key to informing families, as well as clinicians, of the value of supporting very premature babies.”