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Improving outcomes for very preterm babies and their parents

An NIHR-funded programme of research to improve the quality of care and health of very preterm babies has improved understanding of parents’ experiences and informed both clinical guidelines and the direction of future research.

Published: 24 May 2023

Improving care for vulnerable babies

Very preterm babies, described as those born before 32 weeks of pregnancy, often need help with breathing, feeding and other health issues immediately after being born. One in 100 babies in the UK are born before 32 weeks and while most grow up to be healthy, they are more likely to have disabilities and experience behavioural difficulties. 

“Even modest improvement for these children and their families would be important,” said Professor Lelia Duley, former Director of Nottingham Clinical Trials Unit at the University of Nottingham.

With this in mind, a team of researchers led by Professor Duley investigated how outcomes for these vulnerable babies and their families can be improved through a broad programme of research funded by a £1.9 million NIHR Programme Grants for Applied Research award. 

Ranging from identifying and prioritising research gaps within preterm birth to a trial of umbilical cord clamping (and cutting) management, together the projects aimed to identify how the care and long-term health of very preterm babies could be improved.

Providing family-centred care at the bedside

Very preterm babies often have difficulty breathing immediately after birth, meaning that doctors quickly clamp and cut the umbilical cord to resuscitate them. Taking the baby away for care is upsetting for the parents though, and they have described how important it is to have their baby nearby. 

In a move to make care more family centred, a team led by neonatologist Dr Bill Yoxall and obstetrician Professor Andrew Weeks, both consultants at Liverpool Women’s Hospital and researchers with the team, worked with representatives of parents and babies to develop a small mobile resuscitation trolley to allow immediate care to be carried out beside the mother.

"This is a major advance for neonatal care. The LifeStart trolley allows whatever care is needed to be done right alongside the mother. It’s better for babies and better for mothers."

Professor Andrew Weeks, Consultant Obstetrician at Liverpool Women’s Hospital

The team’s evaluation of the trolleys in the Liverpool Women’s Hospital, published in BMC Pediatrics, showed that life-saving care could be provided successfully at the bedside. It has since been developed commercially by Inspiration Healthcare and in 2011 it won a Medical Futures Innovation Award for best innovation in service redesign. Other UK maternity units are now using the trolley, helping them deliver more family-centred care after birth for around 2,000 babies each year. The trolleys have also been adopted internationally by some hospitals in countries including Norway, Italy and the USA.

Professor Weeks also worked with Bryn Y Neuadd Hospital in North Wales to develop the BabySaver tray for low-resource settings. A study is currently underway to see if the tray can support effective care for preterm babies. 

A key benefit of the LifeStart trolley was being able to care for the baby with the umbilical cord still intact. Although immediate cord clamping was standard care in the NHS at that time, the possible health benefits of delaying cord clamping among preterm babies warranted further study in the team’s Cord pilot trial. 

This trial recruited 261 women in preterm labour (before 32 weeks) and randomly assigned them to have their babies’ umbilical cords clamped either immediately (within 20 seconds) after birth or after waiting for at least 2 minutes. 

Their results, published in the Archives of Disease in Childhood, suggested that cord clamping after 2 minutes, and providing immediate care with the cord intact, may improve outcomes for very preterm babies. This is reflected in current NICE guidelines, which now recommend waiting at least 60 seconds before clamping the cord in preterm births.

Setting the research agenda around preterm birth

In the past, gaining women’s consent to take part in research has been particularly difficult during quick and unexpected preterm births. To counter this problem and improve processes for future studies, the team developed and successfully used a two-stage consent pathway in the Cord pilot trial (published in Trials journal). This approach is now recommended by the Royal College of Obstetricians and Gynaecologists for birth-related research trials and also within stroke research settings.

Following the Cord pilot trial, the team went on to establish an international group of researchers to collect information about preterm babies’ health following different cord-clamping procedures. Together they planned a large systematic review using individual participant data – the international Cord management at preterm birth study (iCOMP) – which will provide detailed evidence on the best practices to inform guidelines and support doctors’ work. Its protocol was published in BMJ Open and its first results were presented at the 2023 Pediatric Academic Societies meeting in Washington DC.

Looking at the broader picture of improving preterm babies’ care, an overarching aim for the programme was to identify gaps in knowledge from the perspective of people affected by preterm birth. “Resources for research are limited, and so we need to make sure that the research we do answers questions that are important to clinicians who care for babies born preterm, and their families,” explained Professor Duley.

Working with the James Lind Alliance*, opinions were sought from nearly 400 families and clinicians to produce their top 15 priorities for research into improving care for babies born preterm (published in the BMC Pregnancy and Childbirth). 

While several of the top priorities were already well recognised as important research topics, they also found that parents often had different motivations from health professionals. This list is now being used by the NIHR and researchers to plan future research, helping families’ opinions and questions to be heard and answered. 

*The James Lind Alliance is an NIHR-hosted initiative established to bring patients, carers and clinicians together to identify and prioritise unanswered questions or evidence uncertainties that they agree are the most important.  
The study was funded by the NIHR Programme Grants for Applied Research.
More information about the study is available on the NIHR’s Funding and Awards website.

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