Using routinely recorded national data to improve care for the most preterm babies

We both work in the field of neonatology and as such, have spent many hours moving preterm and sick babies in the back of ambulances. Looking after fragile and often unwell infants in such an environment is challenging: vibration, movement and noise are unavoidable (despite the best efforts of the ambulance team), and how these factors affect the most preterm babies has not been clear.

Why are extremely preterm babies moved between hospitals? Extremely preterm labour is rare, but when it happens it is often unexpected and sometimes precipitant. As a result, it is not uncommon for women in extremely preterm labour to find themselves in hospitals that lack the specialist neonatal services needed to look after extremely preterm babies. Such babies can either be moved to a hospital with specialist neonatal facilities as a fetus prior to delivery, an “in-utero transfer,” or after they are born, as a “post-natal transfer.” Some countries, like Finland, effectively facilitiate in-utero transfers so that 95% of extremely preterm babies are born at hospitals with specialist neonatal services. [1] In the United Kingdom however, in-utero transfers are less well organised, and the proportion of extremely preterm babies transferred postnatally is higher, and increasing. [2,3]  

To what degree do these postnatal transfers matter? We set out to answer this by looking at the outcomes of extremely preterm babies born in a non-specialist unit and transferred in the first two days. As comparators we chose infants who were not transferred either because they were born in a hospital with specialist neonatal units, or were born in a non-specialist unit, but were not transferred and so received their initial care there. The most robust way to answer this question would be a randomised clinical trial, but as this is neither ethical nor feasible, we undertook a matched observational study. The UK is internationally unique in having routinely recorded national neonatal data from all NHS neonatal units available for research, through the National Neonatal Research Database (NNRD). [4] This rich, population-level dataset allowed us to look at this research question by forming three groups of infants with different transfer patterns, but carefully matched in terms of all other measured potentially confounding background factors. The results from this analysis are striking—more babies die or are recorded as having severe brain injury if they are born at hospitals without specialist neonatal intensive care units, regardless of whether they are transferred to a specialist unit or not. 

So, what can be done about this? The fact that extremely preterm birth in a non-specialist centre is almost unprecedented in other high-income countries clearly shows that organisational solutions exist. [1] Preterm infants make up a large proportion of brain injuries that occur at or soon after birth, reduction of which has been rightly identified as a national ambition. [5] These results clearly quantify how important extremely preterm post-natal transfer is in contributing to newborn brain injury and death, and identify a way to reduce them—organising perinatal services so that women at risk of extremely preterm birth are cared for in tertiary centres.

This work was only possible thanks to the parents and families who agreed for their data to be used to improve neonatal care, and the thousands of doctors and nurses who record high-quality information as part of day-to-day NHS neonatal care, and shows the value of routinely recorded data in improving clinical care.

Chris Gale is a Reader in Neonatal Medicine at Imperial College London and a Consultant Neonatologist at Chelsea and Westminster Hospital NHS Foundation Trust. Twitter: @DrCGale

Kjell Helenius is a PhD Student at University of Turku, Finland and a Fellow in Neonatology at Turku University Hospital, Turku, Finland. Twitter: @KjellHelenius

Competing interests: Please see research paper.

References:

  1. Helenius K, Gissler M, Lehtonen L. Trends in centralization of very preterm deliveries and neonatal survival in Finland in 1987-2017. Transl Pediatr. 2019;8(3):227-32.
  2. Gale C, Hay A, Philipp C, Khan R, Santhakumaran S, Ratnavel N. In-utero transfer is too difficult: Results from a prospective study. Early Hum Dev. 2011.
  3. Gale C, Santhakumaran S, Nagarajan S, Statnikov Y, Modi N. Impact of managed clinical networks on NHS specialist neonatal services in England: population based study. BMJ. 2012;344:e2105.
  4. Statnikov Y, Ibrahim B, Modi N. A systematic review of administrative and clinical databases of infants admitted to neonatal units. Arch Dis Child Fetal Neonatal Ed. 2017;102(3):F270-F6.
  5. Department of Health and Social Care. New ambition to halve rate of stillbirths and infant deaths 2015; Available from: https://www.gov.uk/government/news/new-ambition-to-halve-rate-of-stillbirths-and-infant-deaths.