Background Preterm birth is the most important determinant of adverse infant outcomes. Research agendas in this area have been determined primarily by researchers.
Objectives To identify and prioritise future research areas in preterm birth that are most important to service users and practitioners.
Methods A priority setting partnership was established with families with experience of preterm birth and organisations representing them, obstetricians, neonatologists, midwives and neonatal nurses. Research uncertainties were gathered from surveys and analysis of systematic reviews and clinical guidance. Prioritisation was through voting; final ranking occurred at a facilitated workshop, as advocated by the James Lind Alliance.
Results 593 uncertainties were submitted by 386 respondents (58% service users, 30% healthcare professionals and 12% from those in both roles); 52 were identified from literature reviews. After merging similar questions, 104 were distributed for voting. From the 30 most popular uncertainties, the top 15 questions were prioritised in a facilitated workshop These include prevention and prediction of preterm birth, neonatal infection, lung damage, necrotising enterocolitis, pre-eclampsia, preterm premature rupture of the membranes, optimal neonatal feeding strategy, pain perception and management, a care package at neonatal discharge, emotional and practical support, attachment and bonding, and the best time for cord clamping.
Conclusions These priorities provide guidance to ensure that future research addresses questions that are important to service users and clinicians. Challenges for the priority setting partnership included maximising participation amongst people most affected by preterm birth, the breadth of the topic and securing input from an appropriate range of clinicians.