Living with pulmonary fibrosis: how affected people experience disease-related information, health services and self-management strategies
Thomas F Riegler, Thimo Marcin, Markus Wirz, Patrick Brun, Milo A Puhan, Sabina Guler, Anja Frei · 2025
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Description
Scarred lungs make breathing a daily negotiation, and patients often feel under-informed. Thomas Riegler and co-authors interviewed eleven people with pulmonary fibrosis about the information, services, and self-management support they actually experience. Conversations lasted up to seventy minutes and covered staying well, exercise, oxygen use, and symptoms such as breathlessness, cough, and fatigue.
Doctors and nurses were the main source of information, yet for hard topics like life expectancy patients searched the internet, mostly in vain. Guidance on drug side effects and diet was missing, home exercise lacked structure, and cough and fatigue had few workable strategies. The authors recommend blended programs that pair digital resources with human contact rather than replacing it.
Catalog record
| CREATOR | Thomas F Riegler, Thimo Marcin, Markus Wirz, Patrick Brun, Milo A Puhan, Sabina Guler, Anja Frei |
|---|---|
| YEAR | 2025 |
| COLLECTION | PAPERS |
| FORMAT | TXT |
| FILE SIZE | 35 KB |
| VERSION | 1.0 |
| LICENSE | CC BY 4.0 |
| RIGHTS | CC BY |
| SOURCE | Europe PMC |