Co-designing FILIP: The pulmonary fibrosis learning and self-management program
Year: 2025
Type: conference-paper
Abstract: Introduction: 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). Aim: To co-create a PESM program for people with PF. Methods: 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). Results: 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. Conclusion: 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: Thomas Riegler, Thimo Marcin, Sabina A. Guler, Markus Wirz, Lauren Clack, Milo A. Puhan, Patrick Brun, Anja Frei
Language: English
Subfield: Pulmonary and Respiratory Medicine
Field: Medicine
Domain: Health Sciences
Open Access status: green
OpenAlex ID: W4416634666
FWCI:
Cites:
Cited by:
Related to: