Evaluating Whether Oxygen Treatment Helps People with Pulmonary Fibrosis Breathe Easier [Internet]

Background: Pulmonary fibrosis (PF) is a life-shortening condition marked by progressive shortness of breath, fatigue, and ever-declining quality of life.^, For many patients with PF, supplemental oxygen (O₂) is prescribed to maintain normoxia and stave off complications of hypoxemia, in the hopes of improving symptoms and maintaining day-to-day physical functioning. Very little is known about O₂ in patients with PF—whether and how patients benefit by using it and how they perceive its benefits and hardships.

Objectives: To enhance understanding of O₂ and its utility in and adoption by PF patients, by examining how they perceive it and by comparing how perceptions and a range of outcomes change from before to after daily O₂ use was initiated.

Methods: We partnered with PF patients and other relevant stakeholders to conduct a mixed-methods research program. We collected quantitative data at 4 time points (enrollment [T0], the week before O₂ [T1], 1 month after O₂ [T2], and 9-12 months later [T3]) in a nationwide, pre-post longitudinal study, and we collected qualitative data via semistructured telephone interviews with the aim to enrich findings resulting from the quantitative data.

Results: Of 300 subjects enrolled, 43 were started on O₂ by their treating practitioners. Most were White men who had idiopathic pulmonary fibrosis. On average, O₂ did not improve dyspnea ratings from immediately before the start of supplemental oxygen to 1 month later (primary end point). However, on secondary analyses, nearly a third of subjects' dyspnea ratings improved by an amount greater than the questionnaire's minimum important difference. The mean 7 months from T0 to T1 showed a trend toward increasing fatigue (slope for Fatigue Severity Scale score 0.41 ± 0.32 points per month; P = .2) that improved significantly by 1 month after O₂ (slope −2.5 ± 1.2; P = .03) but was not sustained to 9 to 12 months later. Physical functioning declined significantly among subjects whose need for O₂ increased (from exertion only to continuous) from T2 to T3, but not among subjects whose O₂ need remained stable (exertion only) during that time.

In the qualitative work, patients and loved ones experienced benefits and hardships from O₂ and described ways to make the process of using O₂ better. Caregivers described how O₂ helped their patient loved ones (PLOs). They also explained how it created several mental and physical challenges for them and their PLOs, stating it forced them to take on more of the physical work around the home; constrained their social participation; and, for many, created strain on their relationship with their PLO.

Conclusions: Supplemental oxygen may improve certain outcomes in PF patients, but significant hardships are associated with its use. Additional research should identify ways to make the process of obtaining and using O₂ easier for these patients and their loved ones.

Limitations and Subpopulation Considerations: The primary limitation of the longitudinal study was small numbers. We needed 83 subjects to have 80% power to detect a 5-point difference in dyspnea score from T1 to T2. We had only 25% power to detect this difference. We were not equipped to determine if O₂ was prescribed as we believe best or if subjects used it as prescribed. Because the study lacked a control group, results should be interpreted with caution.