Laura Fabbri
Research priorities for progressive pulmonary fibrosis in the UK
Fabbri, Laura; Russell, Anne-Marie; Chaudhuri, Nazia; Adams, Wendy; Cowan, Katherine; Conway, John; Dickinson, Wendy; Gibbons, Michael; Hart, Simon; Jones, Steve; Lynch-Wilson, Jenny; McMillan, Tom; Milward, Steve; Ward, Maureen; Wright, Louise Elisabeth; Jenkins, Gisli
Authors
Anne-Marie Russell
Nazia Chaudhuri
Wendy Adams
Katherine Cowan
John Conway
Wendy Dickinson
Michael Gibbons
Professor Simon Hart S.Hart@hull.ac.uk
Professor in Respiratory Medicine
Steve Jones
Jenny Lynch-Wilson
Tom McMillan
Steve Milward
Maureen Ward
Louise Elisabeth Wright
Gisli Jenkins
Abstract
Introduction Health research bodies recommend patient involvement and engagement in research and healthcare planning, although their implementation is not yet widespread. This deficiency extends to progressive pulmonary fibrosis (PPF), where crucial aspects remain unknown, including causal mechanisms, curative treatments and optimal symptom management. This study addresses these gaps by seeking stakeholders’ perspectives to guide research and treatment directions.
Method A priority-setting partnership was established to explore stakeholders’ priorities in the diagnosis, treatment, management and care of PPF, including idiopathic pulmonary fibrosis which is the archetypal PPF. Stakeholders included people living with PPF, their carers, relatives and healthcare professionals involved in their management.
Results Through an online open-ended survey, 2542 responses were collected from 638 stakeholders. Thematic analysis identified 48 specific research questions, which were then cross-referenced with academic literature to pinpoint research gaps. Following the evidence check, 44 unanswered questions were shortlisted by 834 stakeholders in a second online survey. Ultimately, a top 10 priority list was established through consensus.
The prioritised research questions include (1) improved diagnosis accuracy and timing, (2) development of new treatments, (3) enhanced accuracy in primary care, (4) optimal timing for drug and non-drug interventions, (5) effective cough treatment, (6) early intervention for PPF, (7) improved survival rates, (8) symptom reduction, (9) impact of interventions on life expectancy and (10) new treatments with reduced side effects.
Conclusion Stakeholders’ priorities can be summarised into five areas: early diagnosis, drug and non-drug treatments, survival and symptom management. Ideally, these topics should guide funding bodies and health policies.
Citation
Fabbri, L., Russell, A.-M., Chaudhuri, N., Adams, W., Cowan, K., Conway, J., Dickinson, W., Gibbons, M., Hart, S., Jones, S., Lynch-Wilson, J., McMillan, T., Milward, S., Ward, M., Wright, L. E., & Jenkins, G. (2024). Research priorities for progressive pulmonary fibrosis in the UK. BMJ Open Respiratory Research, 11(1), e002368. https://doi.org/10.1136/bmjresp-2024-002368
Journal Article Type | Article |
---|---|
Acceptance Date | Aug 16, 2024 |
Online Publication Date | Sep 3, 2024 |
Publication Date | 2024-09 |
Deposit Date | Sep 5, 2024 |
Publicly Available Date | Sep 6, 2024 |
Journal | BMJ Open Respiratory Research |
Electronic ISSN | 2052-4439 |
Publisher | BMJ Publishing Group |
Peer Reviewed | Peer Reviewed |
Volume | 11 |
Issue | 1 |
Pages | e002368 |
DOI | https://doi.org/10.1136/bmjresp-2024-002368 |
Public URL | https://hull-repository.worktribe.com/output/4795059 |
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Copyright Statement
© Author(s) (or their employer(s)) 2024. Re-use permitted under CC BY. Published by BMJ. https://creativecommons.org/licenses/by/4.0/
This is an open access article distributed in accordance with the Creative Commons Attribution 4.0 Unported (CC BY 4.0) license, which permits others to copy, redistribute, remix, transform and build upon this work for any purpose, provided the original work is properly cited, a link to the licence is given, and indication of whether changes were made. See: https://creativecommons.org/licenses/by/4.0/.
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