Diffuse Lung Disease |

Protocol for a Mixed-Methods Study of Supplemental Oxygen in Pulmonary Fibrosis FREE TO VIEW

Amanda Belkin; Kaitlin Fier; Karen Albright; Susan Baird; Brenda Crowe; Linda Eres; Marjorie Korn; Leslie Maginn; Mark McCormick; Elisabeth Root; Thomas Vierzba; Frederick Wamboldt; Jeffrey Swigris, MS
Author and Funding Information

Autoimmune Lung Center and Interstitial Lung Disease Program, National Jewish Health, Denver, CO

Chest. 2014;146(4_MeetingAbstracts):370A. doi:10.1378/chest.1993636
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SESSION TITLE: Interstitial Lung Disease Posters II

SESSION TYPE: Original Investigation Poster

PRESENTED ON: Wednesday, October 29, 2014 at 01:30 PM - 02:30 PM

PURPOSE: To describe the protocol for a study to determine whether or how supplemental oxygen affects patients with pulmonary fibrosis.

METHODS: A 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 one 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.

RESULTS: We have designed an informative study whose successful completion will yield a compilation of data that begins to fill the information vacuum that currently exists around the issue of whether O2 benefits patients with PF. These data will propel the field to a new level of understanding of whether/how O2 improves how PF patients feel or function and provide the evidence patients and prescribers need to make informed decisions about O2. Because of the mixed-methodology we employ in this project, we will also be able to tease out why certain patients do not benefit from O2 and identify the logistical and psychological barriers which prevent people from consistently or effectively using O2.

CONCLUSIONS: Throughout 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 www.pulmonaryfibrosisresearch.org.

CLINICAL IMPLICATIONS: We can use this newfound understanding to begin to devise ways we can all work together—physicians, patients, loved ones, suppliers, manufacturers, etc.—to improve the overall O2 experience.

DISCLOSURE: The following authors have nothing to disclose: Amanda Belkin, Kaitlin Fier, Karen Albright, Susan Baird, Brenda Crowe, Linda Eres, Marjorie Korn, Leslie Maginn, Mark McCormick, Elisabeth Root, Thomas Vierzba, Frederick Wamboldt, Jeffrey Swigris

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