Understanding emotional and practical challenges of initiating oxygen therapy in pulmonary fibrosis: insights from a patient-centered survey

Background: Pulmonary fibrosis (PF) causes respiratory insufficiency due to progressive lung scarring and impaired gas exchange. Although no curative treatment exists, pharmacological therapies may slow progression, while oxygen therapy alleviates hypoxemia, improves functional capacity, and enhances well-being. This study explored psychosocial and practical barriers to oxygen initiation, and their prevalence, among patients with PF.

Methods: We conducted a cross-sectional mixed-method survey in 2024, following the Consensus-Based Checklist for Reporting of Survey Studies (CROSS), co-developed with the Dutch Pulmonary Fibrosis Patient Association. The 26-item survey was distributed via patient support groups and interstitial lung disease (ILD) clinics in the Netherlands. Eligible participants had PF and were using oxygen therapy. Closed-ended responses were analyzed descriptively, and open-ended responses underwent thematic analysis to capture both measurable outcomes and patient experiences.

Results: Among 314 respondents, 80% found oxygen therapy beneficial. Initiation was frequently emotionally challenging, eliciting feelings of shame, anxiety, and insecurity. For 40% of participants, oxygen symbolized disease progression and loss, contributing to distress. Practical difficulties included unclear instructions, adjusting flow rates, and managing equipment. Seventy-five percent reported side effects, mostly runny nose, nasal crusting and oral dryness. Notably, 20% experienced no clear benefit, highlighting the need for realistic expectations and ongoing support.

Conclusion: Starting oxygen therapy imposes both emotional and practical burdens on patients with PF. Holistic care addressing clinical, practical, and psychosocial needs is essential to improve acceptance and optimize outcomes. Relevance to clinical practice: Nurses play a central role in reducing barriers to oxygen therapy by providing attentive listening, clear guidance, proactive side-effect management, psychological support, and coordination with physiotherapists and occupational therapists. Nurse-led, integrated interventions can enhance acceptance, adherence, shared decision-making, autonomy and quality of life, highlighting the need for tailored, multidisciplinary, patient-centered care.

Patient or public contribution: Patients and the Dutch Pulmonary Fibrosis Patient Association actively contributed to study design and participation.