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.

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Published
2025-09-27
DOI
https://doi.org/10.1183/13993003.congress-2025.pa3006
Primary Topic
Chronic Obstructive Pulmonary Disease (COPD) Research
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article
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article

Co-designing FILIP: The pulmonary fibrosis learning and self-management program

Sabina A. Guler, Thimo Marcin, Anja Frei, Milo A. Puhan et al.
Chronic Obstructive Pulmonary Disease (COPD) Research
article

Co-designing FILIP: The pulmonary fibrosis learning and self-management program

Sabina A. Guler, Thimo Marcin, Anja Frei, Milo A. Puhan, Lauren Clack, Thomas Riegler, Patrick Brun, Markus Wirz
article en

Abstract

<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.

ZHAW Zurich University of Applied Sciences (CH), University of Zurich (CH), University Hospital of Bern (CH), Prevention Institute (US)
Openalex Percentile: Top 48%
Chronic Obstructive Pulmonary Disease (COPD) Research
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