Abstract
BackgroundLittle is known about whether or how supplemental oxygen affects patients with pulmonary fibrosis.Methods/DesignA mixed-methods study is described. Patients with pulmonary fibrosis, informal caregivers of pulmonary fibrosis patients and practitioners who prescribe supplemental oxygen will be interviewed to gather data on perceptions of how supplemental oxygen impacts patients. In addition, three hundred pulmonary fibrosis patients who do not use daytime supplemental oxygen will be recruited to participate in a longitudinal, pre-/post- study in which patient-reported outcome (PRO) and activity data will be collected at baseline, immediately before daytime supplemental oxygen is initiated, and then once and again 9–12 months later. Activity data will be collected using accelerometers and portable GPS data recorders. The primary outcome is change in dyspnea from before to one month after supplemental oxygen is initiated. Secondary outcomes include scores from PROs to assess cough, fatigue and quality of life as well as the activity data. In exploratory analyses, we will use longitudinal data analytic techniques to assess the trajectories of outcomes over time while controlling for potentially influential variables.DiscussionThroughout the study and at its completion, results will be posted on the website for our research program (the Participation Program for Pulmonary Fibrosis or P3F) at http://www.pulmonaryfibrosisresearch.org.
Highlights
Little is known about whether or how supplemental oxygen affects patients with pulmonary fibrosis
Current research suggests Pulmonary fibrosis (PF) patients and their informal caregivers typically view O2 with extreme resignation: it is a visible reminder of disease progression; the equipment can be heavy and cumbersome to lug around; and having to deal with O2 forces patients to strategize before leaving home for the day
We believe we have achieved a balance between the demands the study imposes on subjects and the benefits of the knowledge the PF field will gain once the study is completed
Summary
Little is known about whether or how supplemental oxygen affects patients with pulmonary fibrosis. The stiff lungs of patients with PF hold less air than normal and do not allow transfer of oxygen from airspace to bloodstream. This leads to low blood oxygen levels and shortness of breath. At some point in their illness, many PF patients will develop low blood oxygen levels when sleeping, exerting and/or at rest [4,5]. Such patients may be prescribed supplemental oxygen (O2) to maintain normal blood oxygen levels. O2 is viewed by many PF patients as an unwanted but necessary burden [6,7]
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