Specific content for education and self-management programmes for people with pulmonary fibrosis: a co-creation, multiphase, mixed-method study

Thomas F Riegler; Anja Frei; Markus Wirz; Anne E Holland; Kathleen Lindell; Patrick Brun; Milo A Puhan; Thimo Marcin; Sabina A Guler; PF-HCP-Group

doi:10.1183/23120541.00245-2025

Specific content for education and self-management programmes for people with pulmonary fibrosis: a co-creation, multiphase, mixed-method study

ERJ Open Res. 2025 Nov 17;11(6):00245-2025. doi: 10.1183/23120541.00245-2025. eCollection 2025 Nov.

Authors

Thomas F Riegler¹, Anja Frei², Markus Wirz¹, Anne E Holland^{3

4

5}, Kathleen Lindell⁶, Patrick Brun^{7

8}, Milo A Puhan², Thimo Marcin^{7

9}, Sabina A Guler^{8

9}; PF-HCP-Group

Affiliations

¹ ZHAW Zurich University of Applied Sciences, Institute of Physiotherapy, Winterthur, Switzerland.
² Epidemiology, Biostatistics and Prevention Institute, University of Zurich, Zurich, Switzerland.
³ Centre of Research Excellence in Pulmonary Fibrosis, Camperdown, Australia.
⁴ Department of Physiotherapy, The Alfred Hospital, Melbourne, Australia.
⁵ Department of Respiratory Research@Alfred, Central Clinical School, Monash University, Melbourne, Australia.
⁶ College of Nursing, Medical University of South Carolina, Charleston, SC, USA.
⁷ Center for Rehabilitation and Sports Medicine, Inselspital and Berner Reha Zentrum, Bern University Hospital, University of Bern, Bern, Switzerland.
⁸ Department for Pulmonary Medicine, Allergology and Clinical Immunology, Inselspital, Bern University Hospital, University of Bern, Bern, Switzerland.
⁹ T. Marcin and S.A. Guler contributed equally.

Abstract

Aims: This study aimed to identify and establish comprehensive and specific patient education and self-management (PESM) content created by people with pulmonary fibrosis (PF) and healthcare professionals (HCPs).

Methods: We employed a sequential, multiphase mixed-method approach (qualitative → quantitative → qualitative) incorporating co-creation elements including interviews with people with PF and HCPs, a two-round Delphi study with HCPs and subsequent interviews with people with PF to validate the developed content.

Results: In phase 1, we interviewed 11 people with PF and six healthcare experts in PF. Based on these interviews, we derived 319 items which we distributed in Delphi surveys to 260 HCPs (phase 2). 96 HCPs participated in both Delphi rounds and agreed on 150 out of finally 343 (24 additionally created) items (44%) in seven topics: Staying well with PF; Keeping fit and strong with PF; Managing breathlessness; Managing cough; Managing fatigue; Managing symptoms of anxiety, depression and panic; Using oxygen therapy. In phase 3, six people with PF validated the developed content of phase 2.

Conclusion: We identified specific, clinically relevant and meaningful PESM content for PF through a co-creation approach with people with PF and HCPs. The findings not only inform current and future PESM programmes, patients and clinicians, but also highlight specific areas for future research.