LAUSR

Rationale: Pulmonary clinicians and patients anecdotally report barriers to home supplemental oxygen services including inadequate supply, unacceptable portable options, and equipment malfunction. Limited evidence exists to describe or quantify these problems. Objectives: To describe the frequency and type of problems experienced by supplemental oxygen users in the United States. Methods: The Patient Supplemental Oxygen Survey, a self‐report questionnaire, was posted on the American Thoracic Society Public Advisory Roundtable and patient and health care‐affiliated websites. Respondents were invited to complete the questionnaire, using targeted e‐mail notifications. Data were analyzed using descriptive statistics, paired t tests, and χ2 analysis. Results: In total, 1,926 responses were analyzed. Most respondents reported using oxygen 24 h/d, for 1‐5 years, and 31% used high flow with exertion. Oxygen use varied, with only 29% adjusting flow rates based on oximeter readings. The majority (65%) reported not having their oxygen saturation checked when equipment was delivered. Sources of instruction included the delivery person (64%), clinician (8%), and no instruction (10%). Approximately one‐third reported feeling “very” or “somewhat” unprepared to operate their equipment. Fifty‐one percent of the patients reported oxygen problems, with the most frequent being equipment malfunction, lack of physically manageable portable systems, and lack of portable systems with high flow rates. Most respondents identified multiple problems (average, 3.6 ± 2.3; range, 1‐12) in addition to limitations in activities outside the home because of inadequate portable oxygen systems (44%). Patients living in Competitive Bidding Program areas reported oxygen problems more often than those who did not (55% [389] vs. 45% [318]; P = 0.025). Differences in sample characteristics and oxygen problems were noted across diagnostic categories, with younger, dyspneic, high‐flow users, and respondents who did not receive oxygen education, relating more oxygen problems. Respondents reporting oxygen problems also experienced increased health care resource utilization. Conclusions: Supplemental oxygen users experience frequent and varied problems, particularly a lack of access to effective instruction and adequate portable systems. Initiatives by professional and patient organizations are needed to improve patient education, and to promote access to equipment and services tailored to each patient's needs.