Research priorities for the most premature babies born <25 weeks' gestation: results of an international priority setting partnership.

Abstract

Objective: The James Lind Alliance (JLA) Most Premature Babies Priority Setting Partnership aimed to identify the most important areas for research for infants born <25 weeks' gestation.

Design: Employing standardised JLA methodology, questions for research were sought from stakeholders via an online survey. Summary questions were formed and checked against existing evidence, with unanswered questions compiled into a second shortlisting survey for prioritisation by stakeholders. A stakeholder consensus workshop was held to determine the top 10 research priorities.

Participants: People with lived experience of neonatal intensive care, including parents/carers of preterm infants and adults born preterm, and healthcare professionals caring for preterm infants across Australia, New Zealand and the UK.

Main outcome measure: The top 10 research priorities for infants born <25 weeks' gestation.

Results: From 844 questions received from the initial survey, 81 summary questions were formed, of which 80 were unanswered and included in the second shortlisting survey. The 19 top-ranked questions were taken to the final prioritisation workshop, where the top 10 research priorities were determined by people with lived experience and healthcare professionals. The most important research question identified was 'What can be done in the neonatal intensive care unit to improve long-term health and developmental outcomes?'. Other important areas for research included antenatal interventions and neonatal care at birth, preventing intraventricular haemorrhages, managing pain, postnatal corticosteroid treatment and supporting families.

Conclusions: This study identified the most important areas of research for infants born <25 weeks' gestation, as determined jointly by stakeholders. These findings should be used to guide future research and funding aimed at improving meaningful outcomes for these infants and their families.