Hemy Naomi R, Bates Amber, Frank Belinda, McKenzie Anne, Simpson Shannon J
Wal-yan Respiratory Research Centre, Telethon Kids Institute, Nedlands, Western Australia, Australia.
Community Engagement, Telethon Kids Institute, Nedlands, Western Australia, Australia.
BMJ Paediatr Open. 2025 Feb 4;9(1):e003050. doi: 10.1136/bmjpo-2024-003050.
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.
To conduct a priority setting partnership (PSP) to determine the top 10 research priorities for preterm lung health.
We undertook a modified James Lind Alliance methodology comprising three main stages: (1) an survey with open questions to ascertain the community's most important ideas for future preterm lung health research, (2) survey to distill the main themes into a shortlist of 20 and (3) 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.
We collated 144 submissions from the survey from which 27 themes were developed. From the 150 prioritisation survey responses, the 20 themes receiving the most votes were taken to the . 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.
Priorities identified through the PSP will be invaluable in informing future research into prematurity-associated lung disease.
将患者和公众的观点融入研究过程的每个阶段至关重要，包括设定未来的研究议程。我们对早产相关肺部疾病的认知存在重大差距，这为确定社区的研究重点提供了一个适时的契机。
开展一项优先级设定合作项目（PSP），以确定早产肺部健康的前十大研究重点。
我们采用了改良的詹姆斯·林德联盟方法，包括三个主要阶段：（1）进行一项开放式问题调查，以确定社区对未来早产肺部健康研究最重要的想法；（2）进行调查，将主要主题提炼为20个入围名单；（3）让参与者对最终的前十大重点进行排序。这个PSP反映了澳大利亚医疗环境中早产个体、早产儿童家长和医疗保健专业人员的观点。
我们整理了来自开放式问题调查的144份意见，从中提炼出27个主题。从150份优先级调查回复中，获得最多选票的20个主题进入了最终阶段。参与者确定了以下前十大重点：（1）终身影响；（2）干预措施、治疗方法或支持；（3）持续的肺部健康随访；（4）针对初级医疗保健提供者的诊断工具、资源和教育；（5）为家庭提供信息和增强其能力的资源；（6）与身体健康和发育问题的关系；（7）预防和/或治疗肺部感染；（8）为少数群体提供额外支持、资源和研究；（9）对心理健康的影响；（10）哮喘诊断的可能性。
通过PSP确定的重点对于为未来早产相关肺部疾病的研究提供信息将具有巨大价值。
