Bridget A Graney1, Frederick S Wamboldt2, Susan Baird3, Tara Churney4, Kaitlin Fier4, Marjorie Korn5, Mark McCormick5, Thomas Vierzba5, Jeffrey J Swigris6. 1. Division of Pulmonary Sciences and Critical Care Medicine, University of Colorado Anschutz Medical Campus, Aurora, CO, USA; Participation Program for Pulmonary Fibrosis (P3F), Denver, CO, USA. 2. Participation Program for Pulmonary Fibrosis (P3F), Denver, CO, USA; Division of Pulmonary, Critical Care and Sleep Medicine, Sleep & Behavioral Health Sciences Section, National Jewish Health, Denver, CO, USA. 3. Autoimmune Lung Center and Interstitial Lung Disease Program, National Jewish Health, Southside Building, Office #G011 1400 Jackson Street, Denver, CO 80206, USA. 4. Participation Program for Pulmonary Fibrosis (P3F), Denver, CO, USA; Autoimmune Lung Center and Interstitial Lung Disease Program, National Jewish Health, Southside Building, Office #G011 1400 Jackson Street, Denver, CO 80206, USA. 5. Participation Program for Pulmonary Fibrosis (P3F), Denver, CO, USA. 6. Division of Pulmonary Sciences and Critical Care Medicine, University of Colorado Anschutz Medical Campus, Aurora, CO, USA; Participation Program for Pulmonary Fibrosis (P3F), Denver, CO, USA; Autoimmune Lung Center and Interstitial Lung Disease Program, National Jewish Health, Southside Building, Office #G011 1400 Jackson Street, Denver, CO 80206, USA. Electronic address: swigrisj@njhealth.org.
Abstract
RATIONALE: Supplemental oxygen is prescribed to patients with pulmonary fibrosis to normalize oxygen saturations, decrease symptoms and improve quality of life. Along with potential benefits, patients face challenges as they incorporate oxygen into their lives. OBJECTIVE: Our aim was to better understand the perceptions and experiences of patients with pulmonary fibrosis as they confronted the possibility and realities of using supplemental oxygen. METHODS: We performed a mixed-methods study in which we conducted a series of four structured telephone interviews with five patients with pulmonary fibrosis enrolled in a longitudinal observational study. Questionnaires were administered at the time of the interviews, which were conducted at enrollment in the longitudinal study, immediately prior to starting supplemental oxygen, one month and then 9-12 months after starting oxygen. We used conventional content analysis to analyze interview data for themes within and across the four time points. RESULTS: Prior to starting supplemental oxygen, participants uniformly expected it would improve their physical function and quality of life. They also expected practical and psychological limitations, which after starting oxygen, they found to be more pronounced than anticipated. Despite the challenges, participants attributed benefits in symptoms, confidence and mobility to oxygen and came to a reluctant acceptance of it. Their expectations for guidance and support were inadequately met. CONCLUSIONS: For patients with pulmonary fibrosis, starting and using supplemental oxygen on an everyday basis confers benefits while also presenting a significant number of challenges. The process could be improved by providing them with clearer expectations and trustworthy educational resources. Oxygen case managers could help patients incorporate supplemental oxygen more seamlessly into their lives.
RATIONALE: Supplemental oxygen is prescribed to patients with pulmonary fibrosis to normalize oxygen saturations, decrease symptoms and improve quality of life. Along with potential benefits, patients face challenges as they incorporate oxygen into their lives. OBJECTIVE: Our aim was to better understand the perceptions and experiences of patients with pulmonary fibrosis as they confronted the possibility and realities of using supplemental oxygen. METHODS: We performed a mixed-methods study in which we conducted a series of four structured telephone interviews with five patients with pulmonary fibrosis enrolled in a longitudinal observational study. Questionnaires were administered at the time of the interviews, which were conducted at enrollment in the longitudinal study, immediately prior to starting supplemental oxygen, one month and then 9-12 months after starting oxygen. We used conventional content analysis to analyze interview data for themes within and across the four time points. RESULTS: Prior to starting supplemental oxygen, participants uniformly expected it would improve their physical function and quality of life. They also expected practical and psychological limitations, which after starting oxygen, they found to be more pronounced than anticipated. Despite the challenges, participants attributed benefits in symptoms, confidence and mobility to oxygen and came to a reluctant acceptance of it. Their expectations for guidance and support were inadequately met. CONCLUSIONS: For patients with pulmonary fibrosis, starting and using supplemental oxygen on an everyday basis confers benefits while also presenting a significant number of challenges. The process could be improved by providing them with clearer expectations and trustworthy educational resources. Oxygen case managers could help patients incorporate supplemental oxygen more seamlessly into their lives.
Authors: Fenghua Zhang; Ehab A Ayaub; Bingbing Wang; Estela Puchulu-Campanella; Yen-Hsing Li; Suraj U Hettiarachchi; Spencer D Lindeman; Qian Luo; Sasmita Rout; Madduri Srinivasarao; Abigail Cox; Konstantin Tsoyi; Cheryl Nickerson-Nutter; Ivan O Rosas; Philip S Low Journal: EMBO Mol Med Date: 2020-06-29 Impact factor: 12.137
Authors: A Sansone; D Mollaioli; G Ciocca; E Limoncin; E Colonnello; W Vena; E A Jannini Journal: J Endocrinol Invest Date: 2020-07-13 Impact factor: 4.256
Authors: Susan S Jacobs; Jerry A Krishnan; David J Lederer; Marya Ghazipura; Tanzib Hossain; Ai-Yui M Tan; Brian Carlin; M Bradley Drummond; Magnus Ekström; Chris Garvey; Bridget A Graney; Beverly Jackson; Thomas Kallstrom; Shandra L Knight; Kathleen Lindell; Valentin Prieto-Centurion; Elisabetta A Renzoni; Christopher J Ryerson; Ann Schneidman; Jeffrey Swigris; Dona Upson; Anne E Holland Journal: Am J Respir Crit Care Med Date: 2020-11-15 Impact factor: 21.405