title: Protocol for a mixed-methods study of supplemental oxygen in pulmonary fibrosis.
abstract: BACKGROUND
  Little is known about 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 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.
  
  
  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 http://www.pulmonaryfibrosisresearch.org.
authors.forename: Amanda
authors.initials: A
authors.lastname: Belkin
authors.forename: Kaitlin
authors.initials: K
authors.lastname: Fier
authors.forename: Karen
authors.initials: K
authors.lastname: Albright
authors.forename: Susan
authors.initials: S
authors.lastname: Baird
authors.forename: Brenda
authors.initials: B
authors.lastname: Crowe
authors.forename: Linda
authors.initials: L
authors.lastname: Eres
authors.forename: Marjorie
authors.initials: M
authors.lastname: Korn
authors.forename: Leslie
authors.initials: L
authors.lastname: Maginn
authors.forename: Mark
authors.initials: M
authors.lastname: McCormick
authors.forename: Elisabeth D
authors.initials: ED
authors.lastname: Root
authors.forename: Thomas
authors.initials: T
authors.lastname: Vierzba
authors.forename: Frederick S
authors.initials: FS
authors.lastname: Wamboldt
authors.affiliation: Autoimmune Lung Center and Interstitial Lung Disease Program, National Jewish Health, Southside Building, Office #G011 1400 Jackson Street Denver, CO 80206, USA. swigrisj@njc.org.
authors.forename: Jeffrey J
authors.initials: JJ
authors.lastname: Swigris
mesh_terms: D061725:Accelerometry; D017028:Caregivers; D003371:Cough / Q000209:etiology; D004417:Dyspnea / Q000209:etiology; D005221:Fatigue / Q000209:etiology; D040362:Geographic Information Systems; D006801:Humans; D007407:Interviews as Topic; D008137:Longitudinal Studies; D009043:Motor Activity; D010102:Oxygen Inhalation Therapy; D010361:Patients; D010820:Physicians; D011658:Pulmonary Fibrosis / Q000150:complications* / Q000503:physiopathology / Q000628:therapy*; D011788:Quality of Life; D012107:Research Design; D011795:Surveys and Questionnaires