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Using big data to investigate the long-term impacts of periviable births

Dr Nevil Pierse & Dr Max Berry
University of Otago, Wellington

What is the problem and who does it affect?

23-4 weeks’ gestation represents the very margin of human viability. However, the ‘optimal’ care for a woman at risk of delivering a baby at these extremes of gestational age remains uncertain. While it is now possible to resuscitate and keep these vulnerable babies alive, the long-term implications for their health and wellbeing remain very poorly understood.

To better understand the implications of active care at these periviable gestations, high-quality data are required. Current best clinical practice standards rely on limited international data – not directly translatable to the New Zealand context – as well as anecdotal evidence, or the belief of the practicing clinician. Parents, their babies and their medical teams deserve better information so that clinical decisions can be properly evidence-based; robust data is urgently needed to make sense of the complexities associated with birth on the tenuous cusp of survival.

In individual DHBs, the rate of periviable birth is low. Prospective enrolment of these babies in a study, to follow them up as they age, would be incredibly expensive and would take many years to provide meaningful information.

What is this project hoping to achieve?

Fortunately, the Government have recently established a large collection of administrative and clinical data sets, known as the Integrated Data Infrastructure (IDI). This de-identified data set will enable the research team to follow the entire life-course of hundreds of babies born extremely premature and compare them with children born at term, or at less extremes of gestational age. This will allow them to detect any health, developmental or educational problems associated with periviable birth (23-24 week’s gestation). This data will provide a rich source of information for clinicians to counsel families on the probabilities of the long-term consequences of such vulnerable births.

The team of researchers will measure a number of health, educational, and social outcomes at age 4+ of all children born between 1992-2012.

This project is among the first of its kind using the IDI and will glean as much information as possible as to the short, mid, and long-term outcomes – across a number of metrics – for periviable births.

The results could take decision making out of the hands of anecdote, and provide the robust data needed which will enable the best decisions to be arrived at between the clinical community and the families whom they serve.