Tikellis Gabriella, Tong Allison, Lee Joanna Y T, Corte Tamera J, Hey-Cunningham Alison J, Bartlett Michael, Crawford Tonia, Glaspole Ian, Price John, Maloney Jamie, Holland Anne E
Department of Allergy, Immunology and Respiratory Medicine, Monash University, Melbourne, Victoria, Australia.
Department of Physiotherapy, La Trobe University, Melbourne, Victoria, Australia.
Thorax. 2021 Jun;76(6):575-581. doi: 10.1136/thoraxjnl-2020-215731. Epub 2020 Dec 4.
People with pulmonary fibrosis (PF) experience a high symptom burden, reduced quality of life and a shortened lifespan. Treatment options are limited and little is known about what patients, caregivers and healthcare professionals (HCPs)/researchers consider as the most important research priorities. This study aimed to identify the top 10 research priorities for PF across all stakeholders.
Participants included people with PF, caregivers and HCPs/researchers involved with PF. The research priority setting exercise involved three stages: (1) identifying priorities using an open-ended questionnaire and thematic analysis, (2) development of specific research questions at a face-to-face workshop, and (3) online ranking of research questions to identify the top 10 research priorities using nominal group ranking method.
196 participants completed stage 1 generating 560 questions and 14 research themes were identified. Stage 2 involved 32 participants and generated 53 indicative questions from which 39 were used for the final ranking. Stage 3 was completed by 270 participants. The top ranked priorities focussed on medications to reverse scarring in the lungs (ranked 1), improving lung function (ranked 2, 6 and 8), interventions aimed at alleviating symptoms (ranked 5 and 7), prevention of PF (ranked 3 and 4) and the best exercise programme for PF (ranked 10). There was good consensus among patients/carers and HCPs/researchers on the top 10 priorities, however, causes of acute exacerbations and early diagnosis for improving survival, was ranked higher by HCPs/researchers.
Interventions for preserving lung health and alleviation of symptom burden were top research priorities for PF stakeholders.
肺纤维化（PF）患者承受着较高的症状负担，生活质量下降，寿命缩短。治疗选择有限，对于患者、护理人员以及医疗保健专业人员（HCPs）/研究人员认为的最重要研究重点知之甚少。本研究旨在确定所有利益相关者中PF的前十大研究重点。
参与者包括PF患者、护理人员以及参与PF研究的HCPs/研究人员。研究重点设定活动包括三个阶段：（1）使用开放式问卷和主题分析确定重点，（2）在面对面研讨会上制定具体研究问题，（3）使用名义群体排序法对研究问题进行在线排序，以确定前十大研究重点。
196名参与者完成了第一阶段，共提出560个问题，确定了14个研究主题。第二阶段有32名参与者，产生了53个指示性问题，其中39个用于最终排序。第三阶段由270名参与者完成。排名靠前的重点集中在用于逆转肺部瘢痕的药物（排名第1）、改善肺功能（排名第2、6和8）、旨在缓解症状的干预措施（排名第5和7）、PF的预防（排名第3和4）以及PF的最佳运动方案（排名第10）。患者/护理人员与HCPs/研究人员在前十大重点上达成了良好共识，然而，急性加重的原因和改善生存的早期诊断，HCPs/研究人员的排名更高。
保护肺部健康和减轻症状负担的干预措施是PF利益相关者的首要研究重点。
