Community partnership sets priorities for preterm lung health research

Respiratory disease remains one of the most significant complications of preterm birth, with lasting consequences.

Deficits in lung function, persistent respiratory symptoms, and structural lung damage can follow preterm babies into adulthood, placing them at risk of developing early-onset chronic obstructive pulmonary disease (COPD). 

With one in 10 babies born prematurely worldwide over the past decade, tackling this issue is a matter of urgency. A crucial step toward finding solutions is ensuring that consumer and community perspectives are embedded in every stage of the research process, particularly in shaping future research priorities. Until now, major gaps in our understanding of prematurity-associated lung disease have hindered progress. Addressing these gaps required a coordinated effort between researchers, healthcare professionals, and those with lived experience. 

In response to a need from community to determine children's lung health research priorities, the Children’s Lung Health team at the Wal-yan Respiratory Research Centre, a powerhouse partnership between The Kids Research Institute Australia, Perth Children's Hospital Foundation and Perth Children's Hospital, led a large-scale Priority Setting Partnership (PSP) – a collaborative effort bringing together parents of preterm children, young adults born preterm, preterm research cohorts, and healthcare professionals. This ambitious undertaking aimed to identify and prioritise the most pressing research questions in prematurity-associated lung disease, ensuring future studies align with the real-world concerns of those most affected.

Unlike traditional research frameworks, the PSP uniquely integrated the perspectives of the end users of research: consumers, the community and health professionals to establish a shared agenda. The process unfolded in three stages:  

1. Identifying priorities: An open-ended survey gathered insights on key research needs in preterm lung health.  
2. Narrowing the focus: A prioritisation survey refined the responses into a shortlist of 20 themes.  
3. Reaching consensus: A final workshop engaged participants in ranking the top 10 research priorities. 

Wal-yan Respiratory Research Centre Priority Setting Partnership workshops in action

With 150 responses shaping the prioritisation survey, the 20 highest-ranked themes were presented at the consensus workshop, where participants determined the final top 10 research priorities: 

1. Will being born prematurely have lifelong impacts on lung health? 
2. Are there any interventions, treatments or supports to help the lungs of people born prematurely as they develop? 
3. Should there be ongoing lung health follow-up for people born prematurely? 
4. What diagnostic tools, resources and education are available to primary healthcare providers to ensure that people born prematurely with ongoing breathing issues are cared for and directed to specialist lung health doctors? 
5. What resources are needed to inform and empower families about their premature born child’s lung health, and when to seek help? 
6. How do breathing issues relate to other physical health and developmental issues for people born prematurely? 
7. What are the most effective ways of preventing and/or treating lung infections (including COVID) for people born prematurely? 
8. What additional supports, resources and research are needed for the lung health of people born prematurely from minority groups such as rural/remote, Aboriginal & Torres Strait Islanders, CALD*, people with disabilities and LGBTQI? 
9. How do breathing issues impact on the mental well-being of people born prematurely and their families, and what can be done about this? 
10. Are people born prematurely likely to develop asthma, and will they respond to asthma medications? 

This collaborative and evidence-driven approach ensures future research is focused on the areas of greatest need, maximising its impact on patient care and clinical outcomes. By giving a voice to those directly affected by prematurity-associated lung disease, Wal-yan’s PSP has set a clear research agenda – one that will drive meaningful improvements in diagnosis, treatment, and long-term support for preterm individuals.

Read the full paper here.