Abstract
Background: In the United Kingdom, approximately 32500 people live with Idiopathic pulmonary fibrosis (IPF), and 15% of those suffering from non-IPF interstitial lung disease will develop progressive pulmonary fibrosis (PPF). PPF is characterised by a relentless progression and poor prognosis.
Aims: To identify research priorities for PPF as defined by people living with PPF, their carers, and healthcare professionals, in order to enable funders to prioritise research projects significant to those impacted by PPF.
Methods: A Priority Setting Partnership for PPF was established by the James Lind Alliance, University of Nottingham, Imperial College London, and patient charity Action for Pulmonary Fibrosis. A steering group of independent clinicians, carers, and patients met every 8 weeks. A national survey was run to gather stakeholders’ questions about diagnosis, treatment, and management of PPF. Thematic analysis was applied to code and identify themes, from which questions for research were generated. After evidence check, a second national survey and a workshop discussion were run to shortlist the unanswered questions and define a top-ten.
Results: 363 people living with PPF, 163 carers or family members, 93 healthcare professionals, and 4 organization representatives completed the first online survey over February - May 2021. 50 themes emerged which were summarised in 48 summary questions in rounds with steering group members.
Discussion: The unanswered questions will be further shortlisted by the stakeholder groups. The final list will be shared with research funders, national policymakers, and the public, to inform fun
Aims: To identify research priorities for PPF as defined by people living with PPF, their carers, and healthcare professionals, in order to enable funders to prioritise research projects significant to those impacted by PPF.
Methods: A Priority Setting Partnership for PPF was established by the James Lind Alliance, University of Nottingham, Imperial College London, and patient charity Action for Pulmonary Fibrosis. A steering group of independent clinicians, carers, and patients met every 8 weeks. A national survey was run to gather stakeholders’ questions about diagnosis, treatment, and management of PPF. Thematic analysis was applied to code and identify themes, from which questions for research were generated. After evidence check, a second national survey and a workshop discussion were run to shortlist the unanswered questions and define a top-ten.
Results: 363 people living with PPF, 163 carers or family members, 93 healthcare professionals, and 4 organization representatives completed the first online survey over February - May 2021. 50 themes emerged which were summarised in 48 summary questions in rounds with steering group members.
Discussion: The unanswered questions will be further shortlisted by the stakeholder groups. The final list will be shared with research funders, national policymakers, and the public, to inform fun
| Original language | English |
|---|---|
| Article number | 1457 |
| Journal | European Respiratory Journal |
| Volume | 60 |
| Issue number | Suppl 66 |
| DOIs | |
| Publication status | Published online - 1 Dec 2022 |
Bibliographical note
This article was presented at the 2022 ERS International Congress, in session “-”.This is an ERS International Congress abstract. No full-text version is available. Further material to accompany this abstract may be available at www.ers-education.org (ERS member access only).