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expert reaction to new guidance for clinicians and parents on extremely preterm infants

New guidance, published by the British Association of Perinatal Medicine (BAPM), updates the guidelines for the treatment and care of extremely preterm infants.

This Roundup accompanied an SMC Briefing.

 

Prof Alastair Sutcliffe, Professor of General Paediatrics, University College London (UCL), said:

“This new guidance is an accurate summary of a position statement representing key stakeholders in the field of neonatal care.

“This is accurate and reflects an incrementally changing field. The BAPM attempts to summarise an area of medical practice which is innovative and continually improving the prospects for tiny human beings.

“The first rule of medicine is primum non nocere and hereby hangs the conundrum. When it is now recognised that babies born as early as 22 weeks gestation can survive, when is their prognosis sufficient to consider full supportive intensive care rather than palliative care?

“This document attempts to summarise good practice and emphasises the issue of parental involvement. But this in itself represents a limitation, as in the challenging unplanned situation parents find themselves with a very premature baby optimal decisions/ so called informed consent is not easy/ well-nigh impossible.

“One limitation of this report is that all data on premature babies is implicitly out of date by the time it has been collated and analysed often representing outcomes of 5 years or more ago rather than today. Promisingly the general trajectory is up, year on year incrementally care is able to improve prospects for these tiny babies and as yet there is no impasse. I for one welcome this clearly written report.”

 

Prof Andrew Whitelaw, Emeritus Professor of Neonatal Medicine, University of Bristol, said:

“This is an important and very useful document for all staff dealing with very early deliveries and it has arrived at the right time. It is based on the best available evidence and also a wealth of professional real-world experience in the authors. A decade or so ago the available evidence made 23 weeks gestation the threshold at which it may or may not be in the best interests of a baby to be offered high-tech life support and the parents’ wishes should be taken into account in deciding between intensive and palliative care.

“The best evidence from Europe and the USA now indicates that the threshold has shifted to 22 weeks gestation when it can be in the baby´s best interests to choose palliative care because the chances of death or severe disability are so high.

“The document wisely refrains from being too fixed on the number of weeks and takes into account the difficulty sometimes of knowing gestational age, unexpectedly bad or good condition at birth and different attitudes to what is unacceptable disability.

“Useful suggestions on discussion and information to parents are given, making the point that, as hours or days pass, the outlook, and therefore plans, may change. Sometimes very premature birth is unexpected and very rapid so there is no time to inform, discuss or listen to the parents´ attitudes before the birth and helpful advice is given on this.

“The document is particularly good at helping staff to present different types and levels of risk to parents who usually will never have had to consider such issues before.

The document stresses the importance of staff documenting discussion, information to parents and management plans so that a change of shift does not lead to lack of continuity.

“There are 61 references from the clinical and scientific literature, so the information given is very well supported by evidence. It manages to give clear guidelines but also to enable sensitive handling of individual differences. Written for use in the UK, I expect the quality of this document will result in being used in a number of other countries with similar levels of health care.”

 

Professor Neena Modi, Professor of Neonatal Medicine at Imperial College London, immediate past-president of the Royal College of Paediatrics and Child Health (RCPCH) and past-president of the Neonatal Society, said:

“The chances of survival for extremely preterm babies have improved over recent years, but their care remains very complex and must take into account a very wide range of factors. While guidance is essential, care must also be taken not to reduce this to overly simple rules.

“The British Association of Perinatal Medicine is to be congratulated in having produced excellent updated guidance. This recognises that every situation requires individual consideration, detailed discussion with parents and collaboration between maternal and neonatal healthcare teams.

“The guidance is also excellent in recognising the enormous importance of compassionate care where the baby’s best interests lie in not striving inappropriately to sustain life. This is exemplar guidance for the UK and perinatal services around the world.

“Although these babies are not born at the right time, healthcare systems must help ensure they are born in the right place. We published research last week in the British Medical Journal showing mothers at risk of delivering extremely preterm babies should be transferred to a hospital with neonatal intensive care facilities before giving birth, to improve their baby’s chance of survival and reduce the risk of brain damage. This requires close collaboration between maternity and neonatal healthcare teams and those responsible for organising these services.”

 

Christoph Lees, Professor of Obstetrics and Trustee of the International Society of Ultrasound in Obstetrics and Gynecology (ISUOG), said:

“This Framework for Practice provides useful information and guidance for those involved in decision-making at extremely premature gestations. Whilst electronic fetal monitoring is discussed, ultrasound examination of the fetus is mentioned only briefly. Ultrasound provides information on the fetal size, fetal condition, presence of amniotic fluid, whether growth restriction is present, presence of fetal abnormality (commoner in very preterm deliveries) and of course maternal cervical length that are of crucial importance in making decisions about when and how to deliver babies at very early gestations and can inform whether or not to intervene. Most tertiary maternity facilities have immediate access to fetal medicine sub-specialists or specialists who can provide this information-hence we suggest that ultrasound assessment of these babies is an integral part of their perinatal care”

 

Prof Mark Turner, Professor of Neonatology and Research Delivery, University of Liverpool, said:

“The headline is that more babies born extremely early will have treatment that tries to keep them alive and minimises the risk of problems after preterm birth. The previous guideline recommended that babies born at 22 weeks of pregnancy should only have care focussed on survival if they are part of a research study. In the past few years, a number of studies have reported how to support babies born at 22 or 23 weeks of pregnancy. The community of professionals and advocates for families recognises that these new studies should change the way that we look after these very premature babies.

“The story behind this headline is that dialogue between family advocates and professionals has led to improved understanding of how to work together in these very challenging situations. Starting treatment to keep babies alive may not help them if they die soon afterwards or end up with a very poor quality of life. The strong partnership behind this guideline allowed all these issues to be discussed.

“Key features of the guideline are:

  1. The guidelines promote a personalised approach to each pregnancy that reflects the specific risks that affect that pregnancy
  2. Numbers like 22 weeks or 23 weeks should not be the only influence on discussions: each pregnancy deserves a thorough balance between risks and potential benefits
  3. The approach is driven by best practice in communication and counselling
  4. Each pregnancy at risk of birth before 27 weeks, and each birth before 27 weeks, will have a specific plan
  5. All babies will be cared for in the way that parents and professionals agree is the best for each baby. Some will have care that is focused on survival. Others will have comfort or palliative care.

“The guideline will help families during discussions about what is best for babies in these stressful situations.

“The guideline will also support staff by supporting them in their own discussions and their discussions with families.

“The take home messages are:

  1. This guideline reflects contemporary understanding of how to make decisions about the most vulnerable babies in partnership with parents in the light of the information available now to us.
  2. More extremely premature babies will receive intensive care and some of them will survive.”

 

Dr Dimitrios Siassakos, Reader Associate Professor in Obstetrics, University College London (UCL), said:

“This guidance is welcome. Discussions with parents of extremely preterm babies are very difficult, and the document goes some way to help support decisions jointly with parents.

“It is important to note that survival statistics have improved vastly even for babies born at 22 to 23 weeks – but with the caveat that they have to survive labour and birth first. This raises the issue of choosing between vaginal and caesarean birth which the NIHR-funded CASSAVA study aims to address.

“Another important issue that this guidance raises is: If babies are surviving as early as 22 weeks of pregnancy, and giving steroids is an important modifiable factor for better outcome, we should probably consider giving a complete course of steroids to parents of babies likely to be born at 22 weeks – and not 23 to 24 weeks as is currently the guidance and practice.”

 

‘Perinatal Management of Extreme Preterm Birth before 27 weeks gestation’ by the British Association of Perinatal Medicine (BAPM) was publsihed at 00:01 UK TIME on Wednesday 23 October. 

 

Declared interests

Prof Alastair Sutcliffe: I have no conflict of interest but declare I am developing a treatment for premature labour  due to ascending infection which will be used worldwide.

Prof Andrew Whitelaw: No conflict of interest

Dr Christoph Lees:

Trustee-ISUOG

Head of Fetal Medicine-Imperial

Hold research & educational grants and collaborations with Roche, GE, Samsung, Canon

Dr Dimitrios Siassakos: Dr Dimitrios Siassakos is joint lead of the NIHR-funded CASSAVA study to investigate the feasibility of a trial of caesarean versus vaginal birth for preterm birth

None others received.

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