Co-designing FILIP: The pulmonary fibrosis learning and self-management program
<bold>Introduction:</bold> Patient education and self-management (PESM) programs improve quality of life and self-efficacy in people with respiratory diseases. However, no co-created program with a comprehensive list of self-management techniques exists for pulmonary fibrosis (PF). <bold>Aim:</bold> To co-create a PESM program for people with PF. <bold>Methods:</bold> Following the Medical Research Council (MRC) framework for complex interventions and human-centred design principles, we conducted a 4-step co-creation process: 1) Module Development: Based on consensus between people with PF and healthcare professionals (HCPs), we drafted PESM modules covering staying well with PF, keeping fit & strong, managing symptoms (breathlessness, cough, fatigue, mood), and using oxygen therapy. 2) Expert Review: Healthcare experts validated the modules, and a patient communication specialist revised them for clarity. 3) Cognitive Debriefing: People with PF assessed the modules for expectations, completeness, clarity, and functionality. 4) Usability Testing: After revisions, modules were implemented into a web app and tested in a 3-phase process using cognitive debriefings and the System Usability Scale (SUS-DE). <bold>Results:</bold> The co-creation process (07/24–03/25) involved 20 people with PF in cognitive debriefings across multiple modules. All seven modules underwent 10–12 iterative feedback cycles, incorporating tailored functionalities and audio media. <bold>Conclusion:</bold> This study demonstrates a successful co-creation process to develop a PESM program for PF using human-centred design principles within a participatory research framework. The program was developed based on lived experience of people with PF and HCPs and will undergo feasibility testing in clinic.
Authors
- Sabina A. Guler (ORCID: https://orcid.org/0000-0002-9833-5911)
- Thimo Marcin (ORCID: https://orcid.org/0000-0001-7229-5985)
- Anja Frei (ORCID: https://orcid.org/0000-0002-7134-1000)
- Milo A. Puhan (ORCID: https://orcid.org/0000-0003-4721-1879)
- Lauren Clack (ORCID: https://orcid.org/0000-0002-5162-5188)
- Thomas Riegler
- Patrick Brun
- Markus Wirz
Institutions
- ZHAW Zurich University of Applied Sciences (CH)
- University of Zurich (CH)
- University Hospital of Bern (CH)
- Prevention Institute (US)
Publication Details
- Published
- 2025-09-27
- DOI
- https://doi.org/10.1183/13993003.congress-2025.pa3006
- Primary Topic
- Chronic Obstructive Pulmonary Disease (COPD) Research
- Type
- article
- Field-Weighted Citation Impact
- 0.00