Research priorities for preterm lung health research across the lifespan: a community priority setting partnership.

Abstract

Background: It is essential to embed patient and public perspectives into every stage of the research journey, including setting the future research agenda. The substantial gaps in our understanding of prematurity-associated lung disease presented a timely opportunity to determine the community's research priorities.

Objective: To conduct a priority setting partnership (PSP) to determine the top 10 research priorities for preterm lung health.

Design: We undertook a modified James Lind Alliance methodology comprising three main stages: (1) an idea generating survey with open questions to ascertain the community's most important ideas for future preterm lung health research, (2) prioritisation survey to distill the main themes into a shortlist of 20 and (3) consensus workshop where participants were tasked with ranking their final top 10. This PSP is reflective of the view of preterm-born individuals, parents of preterm children and healthcare professionals in an Australian healthcare setting.

Results: We collated 144 submissions from the idea generating survey from which 27 prioritisation themes were developed. From the 150 prioritisation survey responses, the 20 themes receiving the most votes were taken to the consensus workshop. Participants identified the following top 10: (1) lifelong impacts; (2) interventions, treatments or supports; (3) ongoing lung health follow-up; (4) diagnostic tools, resources and education for primary healthcare providers; (5) resources to inform and empower families; (6) relationship to physical health and developmental issues; (7) preventing and/or treating lung infections; (8) additional supports, resources and research for minority groups; (9) impact on mental well-being; and (10) likelihood of asthma diagnosis.

Conclusion: Priorities identified through the PSP will be invaluable in informing future research into prematurity-associated lung disease.