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Patient participation program for pulmonary fibrosis: assessing the effects of supplemental oxygen
Investigator (PI): Swigris, Jeffrey
Performing Organization (PO): (Current): National Jewish Health, Department of Medicine, Division of Pulmonary, Critical Care and Sleep Medicine / (877) 225-5654
Supporting Agency (SA): Patient-Centered Outcomes Research Institute (PCORI)
Initial Year: 2013
Final Year: 2018
Record Source/Award ID: PCORI/CE-12-11-4134
Funding: Total Award Amount: $1,277,948
Award Type: Contract
Award Information: PCORI: More information and project results (when completed)
Abstract: Pulmonary fibrosis (PF) is a rare condition that causes severe shortness of breath, a nagging dry cough, profound fatigue, and early death. Although nearly every PF patient will be prescribed supplemental oxygen (O2), we actually know very little about whether or how O2 might help patients with this horrible disease. For example, we do not know what patients and prescribers expect (or can expect) PF patients to gain by using O2; whether O2 use creates durable, meaningful improvements in PF patients' daily lives; or if such putative improvements outweigh patients' perceptions of being "tied to [their] hoses [oxygen cannulas]." In summary, thousands of PF patients are prescribed O2 despite a globally insufficient understanding of whether or how it affects them. Our overall objective is to enhance understanding of O2-its utility in and adoption by PF patients-by examining how PF patients perceive it and by determining how those perceptions and several things important to patients (such as symptoms, quality of life, activity levels) change from before to after O2 is prescribed. To conduct our research, we will create the P4f (Patient Participation Program for Pulmonary Fibrosis) to identify patients with PF who are willing to participate in research. From the P4f, and via other mechanisms (such as Internet advertisements and through patient advocacy groups such as the Pulmonary Fibrosis Foundation), we will recruit patients with PF to participate in interviews and/or a one-year study of O2. In the one-year study, we will collect data before and for one year after PF patients are prescribed daily-use supplemental oxygen and compare outcomes, including shortness of breath, quality of life, fatigue, cough, and day-to-day functioning before and after O2. Without this study, O2 prescribers and patients will linger uninformed about the effects on patients of this universally prescribed therapy, and when PF patients and their practitioners set out to make critical decisions together about O2, they will remain hamstrung by the absence of pertinent data to inform their choices. This research program embraces PCORI's mission to involve key stakeholders even in the earliest planning phases, targets PCORI's interest in addressing care for patients with rare conditions, and directly aligns with its emphasis on studies conducted in "typical clinical populations" and "considering the full range of patient-centered outcomes."
MeSH Terms:
  • Activities of Daily Living
  • Cough
  • Dyspnea
  • Fatigue
  • Humans
  • Internet
  • Outcome Assessment, Health Care
  • Oxygen /*therapeutic use
  • Oxygen Inhalation Therapy /*methods
  • * Patient Participation
  • Patient Selection
  • Pulmonary Fibrosis /*physiopathology
  • /psychology /*therapy
  • Quality of Life
  • United States
Country: United States
State: Colorado
Zip Code: 80206
UI: 20143068
CTgovId: NCT01961362
Project Status: Completed
Record History: ('2018: Project extended to 2018. 2017: Project extended to 2017.',)