This infographic was developed following the publication of the article “Understanding emotional and practical challenges of initiating oxygen therapy in pulmonary fibrosis: insights from a patient-centered survey” to visually summarize the most important findings and patient experiences.
At the request of the Dutch Pulmonary Fibrosis Patient Association, ild nurses from ild centers of excellence, together with the ild care foundation and Westfalen Medical, conducted a nationwide patient-centered survey among Dutch patients with pulmonary fibrosis to better understand their experiences with oxygen therapy.
More than 300 patients shared their experiences regarding the information they received, the delivery of oxygen equipment, practical challenges, and side effects. While 80% reported clear benefits from oxygen therapy, many also described feelings of uncertainty, shame, or the realization that their disease had entered a new phase. As one patient explained:
“The moment I received oxygen, it felt as if my disease suddenly became visible.”
The infographic highlights not only the practical impact of oxygen therapy, but also the emotional journey many patients experience. It emphasizes the essential role of ild nurses in providing guidance, reassurance, and patient-centered support. Good support can help transform oxygen therapy from a confronting necessity into a means of regaining confidence, maintaining independence, and improving quality of life.