At the request of the Dutch Pulmonary Fibrosis Patient Association, ild nurses from expert ild centers, in collaboration with the ild care foundation and Westfalen Medical in the Netherlands, conducted an online survey among Dutch patients with pulmonary fibrosis. The aim was to gain insight into patients’ experiences with oxygen therapy, including the information provided, delivery of equipment, and possible side effects.
For many patients, starting oxygen therapy is not only a medical step, but also an emotional turning point. One patient described it as: “The moment I received oxygen, it felt as if my disease suddenly became visible.”Among more than 300 respondents, 80% reported benefiting from oxygen therapy. At the same time, many experienced feelings of uncertainty, shame, or the sense that their disease had entered a new phase. This highlights how important proper guidance and support are during this process.
ild nurses play a key role — not only by explaining how oxygen therapy works, but also by listening, discussing expectations, and helping patients deal with practical challenges. When guidance is proactive and patient-centered, oxygen therapy can become more than a confronting necessity: it can help people regain confidence and improve daily quality of life.
Drent M, Trapman L, Hennevelt-Leenen M, Grutters JC, Russell AM. Understanding emotional and practical challenges of initiating oxygen therapy in pulmonary fibrosis: insights from a patient-centered survey. BMC Pulm Med. 2026 Jan 31;26(1):98. doi: 10.1186/s12890-026-04143-z.: LINK