Background:

Preterm birth is the most important determinant of adverse infant outcomes including survival, quality of life, psychosocial impact on the family, and healthcare costs. Research agendas in this area have been determined primarily by researchers.

Objectives:

To identify and prioritize future research areas in preterm birth that are most important to service users and practitioners.

Methods:

A priority setting partnership was established with: organisations representing families in the British Isles with experience of preterm birth, obstetricians, neonatologists, midwives, and neonatal nurses. Research uncertainties were gathered from surveys of service users and healthcare practitioners, and analyses of systematic reviews and clinical guidance. Priorities were set through on-line voting and paper surveys, and further distilled in a facilitated workshop, as advocated by the James Lind Alliance.

Results:

Eliciting research suggestions from all types of stakeholders required extensive networking. 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. The 30 most popular items were discussed at a workshop with service users and professionals, and the top 15 questions put in priority order. 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:

15 top priorities provide guidance for researchers and funding bodies to ensure that future research addresses questions that are important to service users and clinicians. Challenges for the priority setting partnership included maximizing participation amongst people most affected by preterm birth; the breadth of the topic; and securing input from an appropriate range of clinicians.