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ANNALSATS Articles in Press. Published on 19-October-2017 as 10.1513/AnnalsATS.201703-209OC
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Patient Perceptions of the Adequacy of Supplemental Oxygen Therapy: Results of the
American Thoracic Society Nursing Assembly Oxygen Working Group Survey
Susan S. Jacobs1, Kathleen O. Lindell2, Eileen G. Collins3, Chris M. Garvey4, Carme Hernandez5,
Sally McLaughlin6, Ann M. Schneidman7, Paula M. Meek8
1
Division of Pulmonary and Critical Care Medicine, Department of Medicine, Stanford
University, Stanford, CA, 2 The University of Pittsburgh Dorothy P. & Richard P. Simmons Center
for Interstitial Lung Disease at UPMC, Division of Pulmonary, Allergy & Critical Care Medicine,
University of Pittsburgh, Pittsburgh, PA, 3Biobehavioral Health Science, College of Nursing,
University of Illinois/Research Service, Hines VA Hospital, Chicago, IL, 4 Sleep Disorders and
Pulmonary Rehabilitation, Department of Medicine, University of California, San Francisco, San
Francisco, CA, 5Integrated Care Unit, Hospital Clinic de Barcelona/University of Barcelona,
Barcelona, Spain, 6Interstitial Lung Disease Clinic, University of California, San Francisco, San
Francisco, CA, 7Hospice of the Valley, Phoenix, AZ, 8 College of Nursing, University of Colorado
at Denver, Denver, CO
Corresponding Author: Susan S. Jacobs R.N., M.S., 300 Pasteur Dr., Rm H3143, Stanford
University, Stanford, CA 94305-5236. E-mail: ssjpulm@stanford.edu
Author Contributions: S.S.J: Idea and survey generation, manuscript generation, project
oversight, K.O.L.: survey review, manuscript generation, topic insight, E.G.C., C.M.G, C. H., S.M.,
A.M.S.: survey review, manuscript review, specified literature review, P.M.: Statistical guidance
and analysis, manuscript review.
Sources of Support: No financial support; ATS provided survey formatting and electronic data
capture
Running Head: Patient Perceptions of Supplemental Oxygen Use
Descriptor Number: 12.3 Functional Ability/Impairment/Quality of Life/Physical Activity
(Nursing)
Key Words: dyspnea, quality of life, quality of health care, medical devices, mobility limitations
Word Count: 3721
This article has a data supplement, which is accessible from this issue’s table of contents online
at www.atsjournals.org.
Copyright © 2017 by the American Thoracic Society
ANNALSATS Articles in Press. Published on 19-October-2017 as 10.1513/AnnalsATS.201703-209OC
Abstract
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.
Objective: 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 (ATS) Public Advisory Roundtable and patient and healthcareaffiliated websites. Respondents were invited to complete the questionnaire using targeted
email notifications. Data were analyzed using descriptive statistics, paired t-tests and Chi
Square.
Results: 1,926 responses were analyzed. Most respondents reported using oxygen 24 hrs/day,
for 1-5 yrs., 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. 51% of patients reported
oxygen problems, with the most frequent as 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 due to inadequate portable oxygen systems (44%).
Patients living in Competitive Bidding Program (CBP) areas reported oxygen problems more
Copyright © 2017 by the American Thoracic Society
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ANNALSATS Articles in Press. Published on 19-October-2017 as 10.1513/AnnalsATS.201703-209OC
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
healthcare resource utilization.
Conclusion: 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 promote
access to equipment and services tailored to each individual patient’s needs.
Abstract Word Count: 336
Copyright © 2017 by the American Thoracic Society
ANNALSATS Articles in Press. Published on 19-October-2017 as 10.1513/AnnalsATS.201703-209OC
Over one million Americans use home supplemental oxygen for a variety of lung conditions (1).
National (1-6) and international (7) oxygen consensus conferences have proposed
recommendations for prescribing and supplying oxygen, technology development, and patient
education and support. However, limited data are available to quantify how well goals are
being met from a patient perspective. Patient advocacy groups, healthcare professionals and
patients report problems with equipment, services, reimbursement, and portable systems.
Although supplemental oxygen is purported to help patients “continue with their social and
professional lives” (8), patients report that current portable oxygen options relegate them to a
”stay-at-home” lifestyle (9-12).
The socioeconomic and educational factors influencing supplemental oxygen services are
complex. Increasing numbers of patients meet criteria for supplemental oxygen, a consequence
of the large number of those diagnosed with chronic obstructive pulmonary disease (COPD) and
other lung disorders(1, 13).
Oxygen is commonly provided as a benefit of the Center for Medicare and Medicaid
Services (CMS), owing to the age and disability of recipients (14, 15). Consequently, CMS
beneficiaries are affected by economic decisions from the federal Competitive Bidding Program
(CPB) that determines reimbursement for their durable medical equipment (DME). CMS is
required to solicit bids from licensed DME companies to provide equipment and supplies,
including oxygen (16). The intent of the CPB is to reduce costs, ensure beneficiary access to
quality services, and reduce beneficiary out-of-pocket expenses. CMS reviews submitted bids
from DME companies based on a complex formula and awards contracts to those who meet
quality and financial standards and offer the best price. Contracted suppliers must agree to
Copyright © 2017 by the American Thoracic Society
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accept assignment on claims and accept a single payment amount. The median of all winning
bids for an item determines the amount (16). Results of this bidding process determine what
services and equipment are available at each DME and are not uniform across providers. Most
DMEs are moving to a cost-saving “non-delivery” model for home oxygen services, which
excludes providing liquid oxygen.
In 2015, the American Thoracic Society (ATS) Nursing Assembly Planning Committee
addressed supplemental oxygen concerns. In 2016, the Nursing Assembly Oxygen Working
Group (OWG) convened a multi-disciplinary forum (see Figure E1 in the data supplement) to
identify future initiatives. Five areas of concern emerged: 1) lack of data documenting oxygen
users’ precise problems; 2) increased clinician time to complete CMS and other payer-required
documentation; 3) negative impact on supplemental oxygen users from decreased DME
reimbursement; 4) gaps in oxygen education and training; and 5) absence of DME provider care
standard metrics and quality measures.
This paper presents patient-reported data collected from supplemental oxygen users
that identifies the frequency and type of problems that they experience. Our goal was to seek
perspectives of oxygen users as an initial step in improving delivery of this vital service.
Methods
The CHERRIES web survey checklist (17) and E-Survey guidelines (18) directed the methodology
for this analysis.
Copyright © 2017 by the American Thoracic Society
ANNALSATS Articles in Press. Published on 19-October-2017 as 10.1513/AnnalsATS.201703-209OC
Design
This is a descriptive report of responses obtained using the “Patient Supplemental Oxygen
Survey”, (Figure E2) a voluntary, self-report instrument. Respondents were a convenience
sample of adults in the United States prescribed oxygen as a consequence of lung disease.
Survey Development
Content areas identified at the May 2016 ATS multidisciplinary meeting guided item
development. Participants provided input from the perspective of multiple patient, advocacy,
professional, and payer organizations. Three oxygen users participated throughout the process.
ATS participants represented Nursing, Pulmonary Rehabilitation, Health Policy, Government
Relations, and the Public Advisory Roundtable.
Following this initial meeting, a draft paper survey was developed by the OWG chair (SJ)
and reviewed for content and item inclusion by five expert clinicians, each with over 20 years of
experience with oxygen-dependent patients. After revision, the survey underwent a second
review by remaining OWG participants, and representatives from the U.S. COPD Coalition and
American Lung Association (ALA). A consultant in psychometrics provided advice regarding
format and structure.
The revised survey was piloted on paper in a third review by nine oxygen patients to
assess question clarity and completion time. ATS staff then converted items into a
SurveyMonkey® electronic format. Five oxygen patients piloted online survey versions at two
centers to confirm its usability and technical function and minor changes were made.
Copyright © 2017 by the American Thoracic Society
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The final online survey included 60-items, with a combination of multiple choice, Likertscale, and open-ended responses. Respondents were unable to ‘save’ the survey to complete at
another time, but could use a ‘back’ button to review or change answers. The Stanford
University Institutional Review Board approved the project with a waiver for informed consent.
The first page included the purpose of the study, the length of the survey, the voluntary nature
of completing items, and the investigator’s contact information. No health information was
collected to identify respondents and no incentives were offered to respondents.
Survey Administration
The ATS Public Advisory Roundtable (PAR) website posted the survey link from September 1,
2016 through October 24, 2016. Multiple pulmonary organizations placed the link on their
websites, including the OWG, ALA, American Association of Cardiovascular and Pulmonary
Rehabilitation, U.S. COPD Coalition, state societies and the ATS web-based “Washington
Bulletin”. Numerous clinicians provided flyers about the survey in their chest clinics, pulmonary
rehabilitation (PR) programs, and support groups. Survey responses captured through
SurveyMonkey® were exported to SPSS. Response rate was determined by counting unique
internet provider addresses, with duplicates removed prior to analysis with the most recent
entry used.
Statistical Analysis
Statistical analysis included descriptive summaries of categorical variables as frequencies and
percentages, with Chi Square used to test for significant differences. Standardized residuals of
Copyright © 2017 by the American Thoracic Society
ANNALSATS Articles in Press. Published on 19-October-2017 as 10.1513/AnnalsATS.201703-209OC
the associations tested with the Chi Square analysis were used to assess the contribution of
individual comparisons to the overall result. If multiple comparisons had residuals greater than
the absolute value of 2, partitioned contingency tables were used to identify the comparisons
with the greatest influence (19, 20). Continuous variables are reported as means and standard
deviations with t-test and ANOVA used to test for significant differences with Sheffe post hoc
analysis used to identify where these differences occurred.
Results
Demographics
The final survey respondents (n=1926, Figure E3) were 64 ± 11 years of age, primarily female,
from suburban areas, and represented every state (Figure E4). Almost half (44%) reported living
in a CBP area, 45% were unsure and 11% lived in non-CPB areas. COPD (39%) and interstitial
lung disease (ILD) (27%) were the most common diagnoses (Table 1). The majority were retired
(47%) or disabled (41%) with only 23% working outside the home.
Respondents varied in time on oxygen with most reporting usage from 1 year to > 5
years and using oxygen 24 hours/day. One third of respondents used pulse or continuous flow
rates ≥ 5 LPM during exertion. Dyspnea scores (mMRC) were higher off than on oxygen (mean
difference = 1.12; 95% CI 1.06 to 1.16). During the 12 months preceding the survey, 29% of
respondents reported a hospital admission and 34% an emergency room visit.
Copyright © 2017 by the American Thoracic Society
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Education
Most respondents (63%) had attended a PR program (Table 1) and 93% used pulse oximeters.
Liter flow adjustment varied with (35%) using the prescribed flow, 22% adjusting flow based on
“how short of breath she/he felt”, and (29%) adjusted flow during exertion based on pulse
oximeter readings. The majority (65%) related they did not have their oxygen saturation
checked on the equipment delivered to their home. Sources of instruction varied; the majority
(64%) reported being trained by the delivery person. Only 8% were trained by a clinician and
10% related they did not receive instruction (Table 1). Even after receiving instruction, 35%
reported being either “very” or “somewhat” unprepared to operate equipment.
Respondents reporting “Yes” to having oxygen problems more frequently lived in
suburban areas (54%), had LAM (70%), pulmonary arterial hypertension (PAH) (61%), AATD
(60%), or ILD (51%) respectively, used oxygen longer (57% > 5yrs.) and at higher flow rates (56%
≥5 LPM), had more frequent rates of emergency room or hospital admissions during the past
year (56% and 57% respectively), reported higher dyspnea levels off of oxygen (mMRC 2.7 vs
2.5), and had not received oxygen education (64%). There was no difference in PR attendance
rates between those groups reporting oxygen problems (53%) and those who did not (47%).
Equipment
Most respondents (80%) used a portable system outside the home including portable oxygen
concentrators (POC) (33%), small compressed gas tanks (20%), compressed gas ‘E’ tanks (16%),
compressed gas home-fill units (10%), and liquid oxygen home-fill units (13%). The type of
Copyright © 2017 by the American Thoracic Society
ANNALSATS Articles in Press. Published on 19-October-2017 as 10.1513/AnnalsATS.201703-209OC
portable system was not related to participants’ reports of problems with their oxygen systems
(Table 2).
When leaving home, 44% used pulse settings and 26% used continuous flow, 16%
switched between pulse and continuous, and 1% were unsure of their type of flow setting. (13%
did not use oxygen when leaving the house).
Of the 14% of respondents who were employed, 53% used oxygen at work, 29% did not
need oxygen at work, and 18% responded that they should have but did not due to inadequate
oxygen supply or concern for job security. The most common portable system used by those
who worked was a POC (28%).
Mobility
Mobility was a concern; 38% reported being able to leave their home for up to two hours due
to portable system capacity whereas 66% of respondents wanted their portable system to last
5-6 hrs (Figure 1). Respondents reported their ability to travel (30%), socialize (22%), and keep
their saturations >90% (20%) was limited by their portable system.
Finances
Costs varied with the majority (82%) citing a 0-$50/month co-pay (Table 2). Most respondents
(60%) were unaware of co-pay amounts prior to receiving equipment. Numerous respondents
reported paying out-of-pocket for equipment including POCs by 286 participants, batteries by
194 participants and other items by 302 participants.
Copyright © 2017 by the American Thoracic Society
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Problems Experienced
When asked “Have you ever had any type of problems related to your oxygen?", 51% of
respondents answered ‘yes’. Most respondents cited a wide-range of problems with an average
of at least 3 or more problems per individual (average 3.6±2.3, range 1-12) (Figure 3). The
“biggest problem” identified by respondents was equipment malfunction (15%), lack of
physically manageable portable systems (13%), and lack of a portable system that delivers high
enough flow (13%).
When asked what “one thing” they would change to improve their oxygen experience,
the most frequent response was “more portable tanks/supplies so I can leave home more
frequently and for longer periods of time” (17%), followed by “providing a POC when I travel”,
and “service/check equipment on a regular basis”. Almost half (40%) noted waiting for servicing
requests or supply deliveries. Most (70%) were unaware of a number or person to call to file a
complaint about their oxygen problems. Patients living in a CBP area reported oxygen problems
more often than those who did not (p=0.025).
The frequency of patients reporting ‘yes’ to problems did not significantly (p=0.10) vary
by geographic location, with the reported rate of problems ranging from a high in the West of
56% to low in the South of 50%. (Figure 4 and Table E1).
Differences across Diagnostic Groups
There was no difference in self-reported hospital admission rates in the previous year across
diagnostic groups, but self-reports of emergency room visit rates varied with COPD the highest
(39%) and ILD the lowest (29%) (p<.01). There was no difference in the source of oxygen
Copyright © 2017 by the American Thoracic Society
ANNALSATS Articles in Press. Published on 19-October-2017 as 10.1513/AnnalsATS.201703-209OC
education between the diagnostic groups. Patients across all disease categories were equally
affected in restrictions to mobility because of their portable oxygen equipment (Table 3).
Compared to other lung diseases, AATD respondents lived in rural areas more often, and
rarely used oxygen at settings ≥ 5. COPD respondents had the highest rated dyspnea both on
and off of oxygen and also had the most frequent emergency room admissions in the past year,
in contrast to ILD patients who were rarely on oxygen over 5 yrs., most frequently used oxygen
at settings ≥ 5, and had significantly lower frequency of emergency room use. LAM respondents
used high flow oxygen, were younger, and more likely female, as were PAH respondents. AATD
respondents had the highest number using oxygen longer than five years.
The frequency of oxygen problems was significantly different across disease categories
(p<0.01); LAM respondents reported the highest frequency (70%) and COPD the lowest (44%)
(Table 1 and Figure 2).
Discussion
This survey is the first to elicit patient-reported experiences in a large cohort of supplemental
oxygen users and reveals that greater than half of respondents noted numerous and wideranging oxygen problems. Experiencing problems with oxygen was associated with greater use
of health care resources that could, potentially, be lessened with education. Key themes
revealed a focus on equipment function, portability and adequacy of systems to support a
mobile lifestyle. Respondents who were younger, more dyspneic, used high flow oxygen, and
received no oxygen education, were more likely to report having oxygen problems.
Copyright © 2017 by the American Thoracic Society
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Other patient advocacy groups have assessed oxygen problems in response to their
oxygen-dependent constituents' demands for action. The LAM Foundation
surveyed 161 oxygen users in 2014. Of those, 33% reported problems obtaining oxygen
(personal communication, LAM Foundation). The Pulmonary Hypertension Association (PHA)
surveyed 91 patients on supplemental oxygen and found that over 60% experienced the
following service problems: 25% waited more than five days for equipment to arrive, 42% had
missing supplies, and over 45% had misinformation or no support from the DME travel
department (Personal communication, PHA). The problems identified by respondents in this
survey are consistent with those described in previous investigations (8, 21-23).
The impacted population of oxygen users is significant. Approximately 45% – 70% of
patients with COPD use long-term oxygen therapy 15 or more hours per day (24). A qualitative
COPD study by Arnold et al. (21) explored factors comparable to those in our survey and
identified 1) inappropriate equipment, 2) lack of individualized information and instruction
from healthcare providers, 3) fear of “running out of oxygen”, 4) questioning or not
experiencing the benefit of the intervention, and 5) not wanting to be seen with oxygen
equipment in public. Issues of worry, physically unmanageable systems, machine breakdown,
lack of instruction, and feeling ‘tethered’ to stationary equipment, were consistent with our
results and those of others (22, 23). Informal caregivers report similar burdens of home oxygen
(25). In-depth interviews of five ILD oxygen users over a period of 12 months highlighted the
need for “clearer expectations and trustworthy educational resources” (26).
Acuity level varied amongst these respondents with 30% using high flow oxygen. The
perceived benefit of oxygen on dyspnea as measured by the mMRC was significant in this
Copyright © 2017 by the American Thoracic Society
ANNALSATS Articles in Press. Published on 19-October-2017 as 10.1513/AnnalsATS.201703-209OC
cohort, although a recent review finds a range of effects of oxygen therapy on dyspnea at rest
and during exercise in ILD patients (27). The mMRC is a widely used scale that correlates well
with other scales and health status scores, and clinical and pulmonary parameters (28).
Objectively measured physical inactivity has been reported to be the strongest independent
predictor of mortality in patients with COPD (29) and Idiopathic Pulmonary Fibrosis (30). There
is a strong relationship between the mMRC and physical activity levels in patients with COPD
(31). Importantly, the level of dyspnea has a more significant effect on survival than disease
severity based on FEV1, and correlates with five year survival rates (32).
The combination of worse dyspnea when off oxygen with physically unmanageable
portable systems contributed to respondent descriptions of substantial mobility limitations
across all disease groups. Our analysis also confirmed that experiencing worse dyspnea off
oxygen was associated with respondents reporting problems with their oxygen and greater use
of healthcare resources (ER visits). Patients may have varied responses in terms of their
perceived impact of oxygen on their dyspnea (26). Considering many have few options, it
should be evaluated on an individual basis.
In our survey, patients who received education from healthcare personnel were less
likely to report oxygen problems compared to those educated by the delivery person or who
received no education. The difference may be in the technical focus of instruction by the
equipment delivery person compared to the clinical plus psychosocial approach by clinicians (“a
conversation with the patient as a whole”) (8). Pepin et al confirmed that instruction by a nurse
or physiotherapist improved oxygen compliance in a cohort of COPD patients (33). Katsenos
confirmed that lack of a clear oxygen prescription and instructions limited patient adherence in
Copyright © 2017 by the American Thoracic Society
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a cohort of COPD patients (22), and other investigators note the importance of “managing
expectations” for newly prescribed ILD oxygen patients (34) (35). COPD patients who did not
have routine home follow-up by specialized staff have also been noted to experience worse
survival rates than those who did (36). More recently, the training of patient oxygen users as
peer oxygen educators is being investigated as another option to support home oxygen users
(37), as well as utilizing respiratory care professionals to improve hospital discharge oxygen
education for COPD patients (38).
Completing a PR program did not make a difference in experiencing oxygen problems,
which highlights the persistence of oxygen issues despite receiving education on indications for
oxygen, use with exercise, and monitoring in a PR setting. Further investigation is needed to
determine if equipment problems reflect reimbursement constraints experienced by DME
oxygen suppliers as opposed to patient education. Only one-third of respondents titrated their
oxygen in accordance with their saturations - a surprising finding given the high PR attendance
rate.
In this cohort, 65% of respondents did not have their oxygen saturations tested on their
delivered equipment. Recent reimbursement reductions to DME providers preclude using
licensed respiratory care practitioners in the home. Assessment of exertional hypoxemia on
pulse systems rarely occurs in the clinic setting because exercise oximetry is usually done using
continuous flow, but portable units usually use pulse flow.
Most noteworthy is that half of respondents reported problems with their oxygen; with
an estimated 1-1.5 million U.S. oxygen users the potential impact is enormous. The top three
issues cited include equipment not working, lack of physically manageable portable systems,
Copyright © 2017 by the American Thoracic Society
ANNALSATS Articles in Press. Published on 19-October-2017 as 10.1513/AnnalsATS.201703-209OC
and lack of high flow portable systems. The issues revolving around equipment service from
oxygen suppliers were described in free-text response options including wait times, equipment
malfunction, being ‘stuck’ in contracts, incorrect billing, and the inability to ‘mix’ types of
oxygen systems. Patients were unclear about equipment and service standards. While most
patients reported that their problem was eventually resolved, 70% of patients were unaware of
the Medicare Ombudsman or COPD Info Line to report unresolved problems.
The restrictions on patients being able to be away from their home for more than 2-4
hours was substantial. These respondents listed having more portable systems to leave the
house or travel for longer periods of time as the “one thing” they would change to improve
their oxygen experience. CMS guidelines currently are entitled “Home Oxygen” but these
results confirm that the majority of this cohort of supplemental oxygen users prioritizes the
ability to be out of the home.
Problems related to oxygen were more frequently reported by women, those using
oxygen for longer lengths of time, and those who experienced more breathlessness without
their oxygen. Duration of therapy and symptom severity intuitively identify an oxygen user at
risk for problems; the impact of gender needs to be tested in a sample with a larger male
population. Respondents with LAM, PAH, and ILD had the highest rate of reporting problems
suggesting the need to identify ways to better meet the mobility needs of these individuals.
Future Directions
The complexity of optimizing supplemental oxygen for our patients is clear; there are issues of
education, adherence, equipment, benefit, reimbursement, service quality, and clinician
Copyright © 2017 by the American Thoracic Society
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compliance. As healthcare professionals we can improve the oxygen prescription process,
educate patients, and monitor treatment responses. However, if reimbursement constraints
continue to impact oxygen suppliers, patients’ access to adequate portable oxygen systems will
continue to be affected. The disappearance of liquid oxygen, the inability to provide adequate
portable systems, and the limitations on extra tanks and batteries inhibit patients’ mobility,
exercise, socialization, travel, and work.
After the first full year of implementation of the CBP, CMS reported no change in
beneficiary health status outcomes. While isolation and inactivity are not generally measured
health outcomes, they are clearly documented by this survey’s results as a negative impact
from limited current portable oxygen options. Data exists that poor adherence to prescribed
oxygen is associated with higher use of healthcare resources (39). Less clear, yet important, is
that patients with hypoxemic lung disease may experience frailty and fatigue that challenges
their ability to navigate CMS’ complaints process and advocate for their needs.
There were suggestions of differences in respondent experience that support the need
for studies designed to elicit problems influenced by diagnosis. COPD respondents reported a
greater number of emergency room visits in the previous year and the highest dyspnea levels
when off of oxygen, despite being the group reporting the lowest rate of “Yes” to having
problems with oxygen. ILD and LAM patients reported more frequent problems meeting their
high oxygen flow needs.
Copyright © 2017 by the American Thoracic Society
ANNALSATS Articles in Press. Published on 19-October-2017 as 10.1513/AnnalsATS.201703-209OC
Limitations
Findings of this survey describe the experience of a large cohort of oxygen users from all
geographic regions of the United States. However, our respondents were a convenience sample
of English-speaking oxygen users who responded voluntarily to an online survey, needed access
to a computer, and may not represent the general population of oxygen users. Providing a
paper option may have captured a wider spectrum of oxygen users. Most respondents stated
they used pulse oximeters and an unusually high number attended a PR program and,
therefore, may have had stronger motivation for mobility outside the home. There was also a
predominance of women; it is unknown whether (or how) gender influences responses.
Improved survey instructions might have decreased duplicate responses. Wording of
some questions may not have provided enough options for patients, a limitation evident from
the multiple responses received when ”other” was offered as a free text option. Ethnicity and
income levels were not assessed and may have provided important oxygen access variables.
Selection bias therefore limits the generalizability of these results to all oxygen users.
Conclusions
Over half of supplemental oxygen users in this study experienced numerous and varied
problems with the over-arching theme being one of restricted mobility and isolation.
Equipment malfunction, lack of patient testing and education, and economic constraints were
common. The need for high-flow and physically manageable portable oxygen systems to
support mobility is a priority that professional societies, patient organizations, and durable
medical equipment companies should urgently address.
Copyright © 2017 by the American Thoracic Society
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Acknowledgments
Thank you to the ATS Oxygen Working Group consultants who provided critical survey content
review: Jessica Armstrong, Pulmonary Arterial Hypertension Association; Phabian Barrett, CMS;
Valerie Cheng, Hawaii COPD Coalition; Karen Erickson, Alpha-1 Foundation; Gary Ewart, ATS
Governmental Affairs; Mary Harbaugh, LAM Foundation; Elaine Hensley, CMS; Tom Kallstrom,
American Association of Respiratory Care; Sarah Latham COPD Foundation; Ann McKenna LAM
foundation; Jennifer Mefford, Pulmonary Fibrosis Foundation; Sue Morris, patient; Jason
Moury, COPD Foundation; Tim Meyers, American Association of Respiratory Care; Sue
Sherman, LAM Foundation, Jamie Sullivan, COPD Foundation; Donna Upson M, ATS Health
Policy. Thank you to Leslie Hoffman for her helpful input on the manuscript, Miriam Rodriquez
and PAR of ATS for their support of this project, Sandra Wilson, Palo Alto Medical Foundation
Research Institute, and School of Medicine, Stanford University, for her input on survey
development, and to Joshua Mooney, School of Medicine, Stanford University, for his
assistance during initial project development.
Copyright © 2017 by the American Thoracic Society
ANNALSATS Articles in Press. Published on 19-October-2017 as 10.1513/AnnalsATS.201703-209OC
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do COPD patients not use their portable systems as prescribed? A qualitative study. BMC
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patient-reported outcomes and their measurement. Int J Chron Obstruct Pulmon Dis 2012;
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the strongest predictor of all-cause mortality in patients with copd: A prospective cohort
study. Chest 2011; 140: 331-342.
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30. Nishiyama O, Taniguchi H, Kondoh Y, Kimura T, Kato K, Kataoka K, Ogawa T, Watanabe F,
Arizono S. A simple assessment of dyspnoea as a prognostic indicator in idiopathic
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two physical activity questionnaires. Chron Respir Dis 2013; 10: 19-27.
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than airway obstruction in patients with COPD. Chest 2002; 121: 1434-1440.
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Respiratories. Chest 1996; 109: 1144-1150.
34. Khor YH, Goh NSL, McDonald CF, Holland AE. Oxygen Therapy for Interstitial Lung Disease. A
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Expectations. Ann Am Thorac Soc 2017; 14: 831-832.
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chronic obstructive pulmonary disease patients who receive long-term oxygen therapy. Int J
Tuberc Lung Dis 1999; 3: 1120-1126.
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Table 1. Sociodemographic characteristics, health utilization, and oxygen requirement
of final cohort (n=1926)*
Characteristic
Total
Reported Problems, %
Sample,%
Age, mean (SD)
Female, %
Diagnosis, %
COPD
Interstitial Lung Disease
Pulmonary Hypertension
Alpha-One Antitrypsin Deficiency
Lymphangioleiomyomatosis
Other
Employment, %
Retired
Disabled
Working full time
Working part time
Residence, %
Suburban
Rural
Urban
Live in Competitive Bidding Area, %
Yes
No
Unsure
Duration of oxygen use, %
< 1 year
1-5 years
>5 years
Oxygen requirement, %
Continuous (24 hrs/day)
≥5 LPM exertion (pulse or cont)
Health care utilization, %
Hospital admission past 12 mo.
Emergency Room visit past 12
mo.
Education, %
Attended pulmonary rehab
Education re home oxygen
Oxygen delivery personnel
Yes
No
P Value
64 (11)
72
63 (11)
54
65 (11)
46
<0.001
0.001
<0.001
39
27
18
8
4
5
44
51
61
60
70
55
56
49
39
40
30
45
47
41
8
4
47
57
51
45
53
43
49
55
0.006
0.04
51
28
21
54
46
51
46
54
49
44
11
45
55
49
48
45
51
52
0.02
<0.001
17
51
32
41
51
57
59
49
43
60
31
54
56
46
44
0.006
0.004
29
34
57
56
43
44
0.005
63
53
47
0.17
0.000
64
51
49
Copyright © 2017 by the American Thoracic Society
0.006
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Healthcare personnel
None
mMRC dyspnea score, mean (SD)
Using oxygen
8
10
43
64
1.5 (1.2)
57
36
1.6
1.5
(1.2)
(1.2)
Not using oxygen
2.6 (1.2)
2.7
2.5
(1.2)
(1.2)
*Due to missing data, number of respondents varied for some items.
Copyright © 2017 by the American Thoracic Society
0.28
<0.001
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Page 25 of 56
Table 2. Experience using prescribed oxygen delivery system (n=1926)
Variable
Total
Sample,
%
Reported Problems,%
Yes
No
P
Value
Type of portable oxygen system used
0.12
Portable oxygen concentrator
33
53
47
Small compressed gas tanks
20
49
51
Large ‘E’ compressed gas tanks
16
52
48
Liquid system
13
50
50
Home fill system
13
62
38
Length of time oxygen lasts away from
0.060
home
About 1 hour or less
11
59
41
Up to 2 hours
38
56
44
Up to 4 hours
32
49
51
4-6 hours
15
52
48
More than 6 hours
4
49
51
Current portable system limits activities
<0.001
outside home
Not at all
13
*39
*61
Sometimes
35
52
48
Frequently
23
57
43
All the time
21
*59
*41
Out-of-pocket oxygen co-payment
<0.001
$0
52
*47
*53
$1-$50
31
53
47
$51-$100
9
*61
*39
$101-$200
5
*66
*34
>$200
3
54
46
Due to missing data, number of respondents varied for some items. * Cell significant different
<0.05 as determined by examination of residuals and subpartioning of chi square analysis.
Copyright © 2017 by the American Thoracic Society
ANNALSATS Articles in Press. Published on 19-October-2017 as 10.1513/AnnalsATS.201703-209OC
Page 26 of 56
Table 3. Comparison of demographic characteristics and experience using prescribed oxygen delivery
system by diagnostic group*
Characteristic
No. participants,
n (%)
COPD
ILD
PAH
AATD
LAM
Other
743 (39)
509 (26)
344 (18)
156 (8)
69 (4)
93 (5)
Age, mean (SD)
67 (9)3-6
Female sex, n
(%)
533 (72)
11 (61)*
300 (88)*
95 (61)*
69 (100)*
67 (72)
Residence, n (%)
Suburban
Rural
Urban
360 (49)
225 (30)
152 (21)
278 (55)
122 (24)
103 (21)
178 (52)
89 (26)
75 (22)
76 (49)
54 (35)*
24 (16)*
38 (56)
15 (22)
15 (22)
44 (48)
15 (17)*
32 (35)
Duration of
oxygen use, n
(%)
< 1 yr.
1-5 yrs.
> 5 yrs.
109 (15)
352 (48)
266 (37)
119 (24)
287 (59)
83 (17)*
45 (14)
177 (54)
106 (32)
7 (5)
58 (40)*
80 (55)*
10 (15)
32 (48)
25 (37)
16 (19)
40 (47)
29 (34)
487(66)*
298 (56)
191 (56)
94 (60)
22 (40)*
49 (53)
<0.001
133 (18)*
229 (47)*
103 (32)
48 (33)
29 (44)*
27 (33)
<0.001
2.8(1.2)3,5
2.7(1.2)3,5
2.2(1.2)1,2
2.6(1.2)
2.1(1.2)1,2
2.4(1.3)
<0.001
1.7(1.2)2,3,5
1.4(1.2)1,5
1.3(1.1)1
1.6(1.2)5
0.9(1.0)1,2,4,5
1.6(1.2)
<0.001
223 (31)
138 (29)
95 (29)
29 (20)
21 (30)
32 (37)
0.062
287 (39)
145 (29)*
107 (31)
47 (30)
23 (35)
30 (34)
<0.008
Oxygen
requirement
Continuous
(24hr/day), n
(%)
≥ 5LPM
mMRC score,
mean (SD)
Not using
oxygen
Using
oxygen
Healthcare use
in 12 mos, n (%)
Hospital
admission
Emergency
66 (11)3-5 60 (13)1,2,5
61(9)1,2,5
55 (11)1-4,6 62(12)1,5
P
Value
Copyright © 2017 by the American Thoracic Society
<0.001
<0.001
<0.003
<0.001
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Page 27 of 56
Room
Pulmonary
rehab, n (%)
Home oxygen
education, n (%)
Oxygen
delivery
personnel
Healthcare
professional
None
Other
Current system
limits
activities
outside of
home, n (%)
Not at all
Sometimes
Frequently
All the time
476 (65)
345 (69)
159 (48)*
110 (71)
46 (67)
61 (66)
<0.001
0.696
463 (64)
310 (63)
219 (67)
86 (60)
40 (60)
49 (57)
56 (8)
36 (8)
29 (9)
10 (7)
3 (4)
8 (9)
76 (10)
129 (18)
55 (11)
89 (18)
26 (8)
53 (16)
18 (12)
30 (21)
6 (9)
18 (27)
12 (14)
17 (20)
0.430
92 (14)
237 (37)
166 (26)
149 (23)
56 (13)
165 (38)
112 (26)
105 (24)
42 (15)
122 (45)
49 (18)
59 (22)
16 (12)
53 (39)
37 (27)
29 (22)
8 (13)
30 (48)
15 (24)
9 (15)
8 (11)
29 (40)
16 (22)
19 (26)
Note * Cell significant different <0.05 as determined by examination of residuals and
subpartioning of chi square analysis, Sheffe Post Hoc ANOVA analysis difference between group
indicated as suprascript (1-COPD, 2-ILD, 3-PAH, 4-AATD, 5-LAM, 6-Other
Definition of abbreviations: COPD = chronic obstructive pulmonary disease; ILD = interstitial
lung disease; PAH = pulmonary arterial hypertension; AATD = alpha 1 antitrypsin deficiency;
LAM = lymphangioleiomyomatosis
Copyright © 2017 by the American Thoracic Society
ANNALSATS Articles in Press. Published on 19-October-2017 as 10.1513/AnnalsATS.201703-209OC
Figure Legends
Figure 1. Actual vs. Desired Hours That Portable Oxygen Lasts
Figure 2. Percent of respondents reporting oxygen problems according to diagnosis (n=887
respondents who checked ‘YES” to having oxygen problems). COPD=Chronic Obstructive
Pulmonary Disease, ILD=Interstitial Lung Disease, PAH=Pulmonary Arterial Hypertension,
AATD=Alpha-One Antitrypsin Disease, LAM = Lymphangioleiomyomatosis, Other = Infection,
Lung Cancer, Congestive Heart Failure, Post Lung Transplant, other.
Figure 3. Frequency of types of oxygen problems reported by respondents who replied ‘YES’ to
having oxygen problems (n=899; able to check more than one response).
Figure 4. Percent of respondents by region answering “YES” to having oxygen problems
Copyright © 2017 by the American Thoracic Society
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Figure 1. Actual vs Desired Hours That Portable Oxygen Lasts
338x190mm (96 x 96 DPI)
Copyright © 2017 by the American Thoracic Society
ANNALSATS Articles in Press. Published on 19-October-2017 as 10.1513/AnnalsATS.201703-209OC
Figure 2. Percent of respondents reporting oxygen problems according to diagnosis
(n=887 respondents who checked ‘YES” to having oxygen problems)
COPD=Chronic Obstructive Pulmonary Disease, ILD=Interstitial Lung Disease, PAH=Pulmonary Arterial
Hypertension, AATD=Alpha-One Antitrypsin Disease, LAM = Lymphangioleiomyomatosis, Other = Infection,
Lung Cancer, Congestive Heart Failure, Post Lung Transplant, other.
338x190mm (96 x 96 DPI)
Copyright © 2017 by the American Thoracic Society
Page 30 of 56
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Figure 3. Frequency of types of oxygen problems reported by respondents who replied ‘YES’ to having
oxygen problems (n=899; able to check more than one response).
338x190mm (96 x 96 DPI)
Copyright © 2017 by the American Thoracic Society
ANNALSATS Articles in Press. Published on 19-October-2017 as 10.1513/AnnalsATS.201703-209OC
Figure 4. Percent of respondents by region answering “YES” to having oxygen problems
338x190mm (96 x 96 DPI)
Copyright © 2017 by the American Thoracic Society
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Online Data Supplement
Patient Perceptions of the Adequacy of Supplemental Oxygen Therapy: Results of the American
Thoracic Society Nursing Assembly Oxygen Working Group Survey
Susan S. Jacobs, Kathleen O. Lindell, Eileen G. Collins, Chris M. Garvey, Carme Hernandez, Sally McLaughlin, Ann
M. Schneidman, Paula M. Meek
Copyright © 2017 by the American Thoracic Society
ANNALSATS Articles in Press. Published on 19-October-2017 as 10.1513/AnnalsATS.201703-209OC
E1 Online Supplement: Member List of Oxygen Working Group
ATS Nursing Assembly Oxygen Work Group Membership
ATS International Meeting, San Francisco, 5/15/2016, 11:45-1:15
Present at Meeting
Susan Jacobs RN, MS
Sarah Latham – COPD Foundation
Chair, ATS Nsg Assembly Planning Committee
Jason Moury – RT, COPD Foundation
Chair, Nursing Assembly Oxygen Working Group
Research Nurse Manager and Nurse Coordinator,
Interstitial Lung Disease Program, Stanford
Valerie Cheng (patient*) – Exec Director, Hawaii
COPD Coalition
Sally McLaughlin RN, MSN
Tom Kallstrom – MBA,, RRT
ATS Nursing Assembly Planning Committee
Exec Director American Association or
Respiratory Care (AARC)
Nurse Coordinator –
Interstitial Lung Disease Program, UCSF
Tim Meyers –Assoc. Exec Director AARC
Karen Erickson (patient)–Alpha-1 Foundation,
PAR, Rare Lung Disease Consortium (RLDC)
Kathy Lindell, PhD, RN
ATS Nursing Assembly Planning Committee
Former Chair, Nursing Assembly
Sue Sherman MBA Executive Director,
Research Ass’t Professor of Medicine
LAM Foundation
CNS, Center for Interstitial Lung Disease
Ann McKenna MBA Patient Services & Education,
University of Pittsburgh
LAM Foundation
Mary Harbaugh PhD (patient),
Ann Schneidmann MSN, CNS, RN, CHPN
LAM Foundation Executive Committee
ATS Nursing Planning Committee
Chair, ATS Clinician Advisory Committee
Pulmonary Resource Program Director
Elaine Hensley, - Chief Liaison, DMEPOS
Competitive Bidding Implementation
Contractor, CA
Hospice of the Valley , Arizona
Eileen Collins PhD, RN, FAACVPR, FAAN
Phabian Barrett Liaison, DMEPOS Competitive
Bidding Implementation Contractor, CA
Chair, Nursing Assembly
Copyright © 2017 by the American Thoracic Society
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Professor, Univ of Illinois, College of Nursing
Jennifer Mefford Director of Strategic
Partnerships, Pulmonary Fibrosis Foundation
Gary Ewart – ATS Governmental Affairs,
Sue M. Scleroderma/ILD patient
Washington Office
Sister of Sue M – informal caregiver
Dona Upson MA, MD
ATS Behavioral Science & Health Services
Research
Jessica Armstrong –Sr. Manager Early Diagnosis
PAH Foundation
Chair, ATS Health Policy Committee
*All patients are current or previous oxygen users
Absent at meeting but Active in Survey Project
Chris Garvey RN, MSN, FNP
Assembly on Pulmonary Rehabilitation
Jamie Sullivan MPH, Sr. Direct of Public Policy
and Outcomes, COPD Foundation
Sleep Disorders, UCSF
Jeanne Rommes (patient)
COPD Efforts
Carme Hernendez Phd, RN
Nsg Assembly, Planning Committee,
Courtney Firak MPH, Director, Programs
University of Barcelona, ES
Pulmonary Fibrosis Foundation
Copyright © 2017 by the American Thoracic Society
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E2 Online Supplement: Patient Supplemental Oxygen Survey
American Thoracic Society (ATS) Nursing Assembly
Oxygen Working Group:
“Patient Supplemental Oxygen Survey”
You have been asked to complete this questionnaire because you are an adult with a lung
condition that requires you to use supplemental oxygen. This questionnaire is part of a
research study to collect detailed information that will help healthcare providers, oxygen
suppliers, insurance companies, Medicare, and others to better understand what types of
home oxygen services are being used, and what kinds of challenges and problems patients
face when using home oxygen. The results of this survey will be used to develop
strategies to improve supplemental oxygen services for patients.
This questionnaire will take approximately 20 minutes for you to complete and it will not
include any information that identifies you. Completing this questionnaire is voluntary,
you can stop at any time, and if there are questions that you prefer not to answer, you do
not have to answer them.
This survey was developed by the American Thoracic Society’s Nursing Assembly “Oxygen
Working Group” in collaboration with the AARC, COPD, Alpha 1, PHA, PFF, and LAM
Foundations.* If you have any question about this survey, please call (650) 725-8083.
*
AARC –American Association of Respiratory Care
COPD-Chronic Obstructive Pulmonary Disease Foundation
Alpha-1- Alpha-1 Antitrypsin Deficiency Foundation
PHA-Pulmonary Hypertension Association
PFF-Pulmonary Fibrosis Foundation
LAM-Lymphangioleiomyomatosis Foundation
Version 28AUG2016ssj
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Page 37 of 56
American Thoracic Society, Nursing Assembly
Oxygen Working Group: Patient Supplemental Oxygen Survey
I.
Information about you
A.
How old are you?
B.
What is your gender?
C.
1.
Male
2.
Female
3.
Other (please specify):
What best describes the area in which you live?
1.
Urban
2.
Suburban
3.
Rural
D.
What state do you live in?
E.
What is your work status? (Check all that apply)
F.
1.
Retired
2.
Working part time
3.
Working full time
4.
Never employed
5.
Disabled
6.
Other (please specify):
What is your main lung problem? (check only one)
1.
Chronic Obstructive Pulmonary Disease (COPD; chronic bronchitis, emphysema)
2.
Alpha-1 Antitrypsin Deficiency Emphysema
3.
Pulmonary Hypertension
4.
Interstitial Lung Disease (ILD)/Pulmonary Fibrosis (Includes Idiopathic Pulmonary Fibrosis,
Chronic Hypersensitivity Pneumonitis, Autoimmune Disease, Scleroderma, Lupus, Sarcoidosis,
Rheumatoid Arthritis ILD, and general Pulmonary Fibrosis and ILD)
5.
Lymphangioleiomyomatosis (LAM)
6.
Lung Cancer
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Page 38 of 56
American Thoracic Society, Nursing Assembly
Oxygen Working Group: Patient Supplemental Oxygen Survey
7.
I have had a lung or heart-lung transplant
8.
Not sure what type of lung problem I have
9.
Other lung disease? (please specify)
G.
Please mark below the most appropriate statement that describes how short of
breath you are when you ARE NOT using oxygen:
1.
I am not troubled with breathlessness except with strenuous exercise
2.
I get short of breath when hurrying on the level or walking up a slight hill
3.
I walk slower than people of my age on the level because of breathlessness or I have to stop
for breath when walking at my own pace on the level
s
breath you are when you ARE using oxygen:
4.
level
I stop for breath after walking about 100 yards (90 meters) (or after a few minutes) on the
I am too breathless to leave the house or breathless on dressing or undressing
5.
H.
Plea e mark below the most appropriate statement that describes how short of
1.
I am not troubled with breathlessness except with strenuous exercise
2.
I get short of breath when hurrying on the level or walking up a slight hill
3.
I walk slower than people of my age on the level because of breathlessness or I have to stop
for breath when walking at my own pace on the level
4.
level
I stop for breath after walking about 100 yards (90 meters) (or after a few minutes) on the
5.
I am too breathless to leave the house or breathless on dressing or undressing
I.
In the past 12 months, how many days have you been in the hospital because of your
lungs or breathing problems?
J.
In the past 12 months, how many times have you been to the emergency room
because of your lungs or breathing problems?
K.
Have you attended a Pulmonary Rehabilitation program?
1.
Yes
2.
No; skip to question M
3.
Not sure
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Page 39 of 56
American Thoracic Society, Nursing Assembly
Oxygen Working Group: Patient Supplemental Oxygen Survey
L.
When you attended a Pulmonary Rehabilitation program, what activities did you
do? (check all that apply)
M.
1.
Exercise Training
2.
Education Sessions
3.
Behavioral Change
How long have you been using supplemental oxygen?
1.
<1 yr
2.
1-5 yrs
3.
More than 5 yrs
N.
Do you have a pulse oximeter to check your oxygen saturations? (small device
placed on your fingertip, earlobe, or forehead to measure oxygen levels)
1.
Yes
2.
No
O.
How do you decide how much oxygen you need (what setting on your machine)
with various activities?
1.
Based on how short of breath I feel
2.
Based on what my healthcare provider ordered for me (I don’t adjust my oxygen according
to my pulse oximeter readings).
P.
3.
Based on what my healthcare provider told me using my pulse oximeter readings
4.
Based on how long my tank will last
5.
Not sure; I was never told how much oxygen to use
6.
Other (please specify):
When you first had oxygen prescribed, how were you taught about how to use it?
1.
The clinic nurse or MD instructed me how to use it but I did not receive anything in writing
2.
I was given verbal instruction and written instructions
3.
The oxygen delivery person taught me how to use it
4.
I did not receive any instruction on how to use it.
5.
Other (please specify):
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Q.
How well did the initial instruction prepare you to operate the equipment and use
oxygen?
1.
I was very unprepared
2.
I was somewhat unprepared
3.
I was moderately well prepared
4.
I was very well prepared
R.
When your portable oxygen system was delivered to your home, did you have your
oxygen saturations measured by a technician or therapist in your home while you were
walking using the portable system that was delivered to you?
1.
Yes
2.
No
3.
I bought my system and it was delivered by mail
4.
Can’t remember or not sure
S.
How often have you had your oxygen readings checked on your own personal
portable oxygen equipment with a pulse oximeter while walking at your doctor visit
(either walking in a hallway or during a Six Minute Walk)?
1.
I don’t use oxygen with activity
2.
At every doctor visit
3.
Every few months at my doctor visit
4.
About once a year when I have a doctor visit
5.
I have never had my oxygen saturations checked using my own portable oxygen equipment
while walking at a doctor visit.
6.
I can’t remember if my oxygen levels have been checked while walking with my own
equipment at my doctor visits.
T.
In what situations do you use your oxygen? Check all that apply
1.
24 hrs/day, or basically for most of the time
2.
With exertion at sea level
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3.
With exertion at altitude
4.
With sleep
5.
With air travel
6.
Other: (please specify)
U.
What liter flow or number setting on your oxygen equipment do you usually use at
rest? (Note: continuous flow refers to a constant flow; pulse/demand refers to oxygen
systems that trigger intermittently only when you breath in)
V.
1.
I don’t use oxygen at rest
2.
0-2 continuous flow
3.
0-2 pulse/demand/intermittent flow
4.
3-4 continuous flow
5.
3-4 pulse/demand/intermittent flow
6.
5-6 continuous flow
7.
5-6 pulse/demand flow/intermittent flow
8.
7 or higher continuous flow
9.
7 or higher pulse/demand/intermittent flow
What liter flow or number setting do you usually use with sleep:
1.
I don’t use oxygen with sleep
2.
0-2 continuous flow
3.
0-2 pulse/demand/intermittent flow
4.
3-4 continuous flow
5.
3-4 pulse/demand/intermittent flow
6.
5-6 continuous flow
7.
5-6 pulse/demand flow/intermittent flow
8.
7 or higher continuous flow
9.
7 or higher pulse/demand/intermittent flow
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W.
II.
What liter flow or number setting do you usually use with exercise or exertion:
1.
I don’t use oxygen with exercise or exertion
2.
0-2 continuous flow
3.
0-2 pulse/demand/intermittent flow
4.
3-4 continuous flow
5.
3-4 pulse/demand/intermittent flow
6.
5-6 continuous flow
7.
5-6 pulse/demand flow/intermittent flow
8.
7 or higher continuous flow
9.
7 or higher pulse/demand/intermittent flow
Information about the oxygen equipment that you use
A.
Do you use a portable oxygen system when you leave the house (excluding air
travel)?
1.
Yes
2.
No; skip to question C
B.
What type of portable oxygen system do you usually use when you leave the house?
(not including when you are traveling)
1.
Portable Oxygen Concentrator (POC)
2.
B, C, D, M6L, M9 cylinders/tanks from my Homefill or Transfill system that I fill myself
3.
E tank (green cylinders/tank about 2 ft tall in a roller cart of some type)
4.
M2, M4, M6, ML6, M9, or small green cylinders/tanks that are delivered to me
5.
Liquid Portable Oxygen containers that I fill from a larger reservoir
6.
Other: (please specify)
C.
Do you use a portable oxygen system (one you can carry or pull when you leave the
house) at work for your job outside of the home?
1.
I do not work outside the home; (skip to question E)
2.
I don’t need oxygen at work; (skip to question E)
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3.
Yes I use oxygen at work
4.
I should use oxygen at work but I don’t because my portable system won’t last long enough
5.
I should use oxygen at work but I don’t because I am concerned about my job security if I
am seen using oxygen
D.
When you use oxygen in a work/employment setting outside of the home, what kind
of system do you usually use?
1.
A Portable Oxygen Concentrator (POC) that runs on batteries that I can take out of the
house either over my shoulder or with a pullcart
2.
A 2 ft tall green ‘E’ cylinder/tank that I use in a pullcart that is not refillable
3.
Small cylinders/tanks about the size of a wine bottle up to about 16 inches that are not
refillable and fit either in a backpack or over my shoulder
4.
A Transfill or Homefill system that is a stationary concentrator that I can also use to fill my
medium size hard tanks when I leave the house.
5.
A liquid oxygen system that I can use to fill smaller tanks or canisters when I leave the
house, or use the larger reservoir while in the house
E.
6.
I am not sure what type of portable system I have
7.
Other combinations:_(specify)
What type of system do you usually use when you sleep?
1.
I don’t use oxygen when I sleep
2.
A stationary home concentrator that plugs into an electrical outlet
3.
A Portable Oxygen Concentrator (POC)
4.
A compressed gas (hard green tank) E tank or very large H tank
5.
A stationary liquid oxygen reservoir
6.
Other type of system (specify):
F.
What type of system do you usually use when you exert yourself at home (exercise,
household activities, showering, etc…)
1.
I don’t use oxygen when I exert myself at home
2.
Stationary home concentrator that plugs into the wall
3.
Portable oxygen concentrator (POC)
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4.
Compressed gas (hard green tanks) -E tanks
5.
My cylinders/tanks from a Homefill or Transfill system (tanks can be filled from the
concentrator)
G.
6.
Stationary liquid oxygen reservoir
7.
Other: (please specify)
What type of setting or flow do you use when you leave the house?
1.
I don’t use oxygen when I leave the house
2.
Pulse, demand or intermittent flow (sometimes called an oxygen conserving device)
3.
Continuous flow
4.
I switch between continuous and pulse flow depending on what I am doing
5.
I am not sure
H.
What is the highest continuous liter flow or number setting that can be selected on
your portable system and regulator (including small tanks, POC, etc.)?
1.
My portable system does not have continuous flow
2.
2
3.
3
4.
4
5.
5
6.
6
7.
7
8.
8
9.
9 or higher
10.
Not sure
I.
What is the highest pulse or demand number setting that can be selected on your
portable system and regulator?
1.
My portable system does not have pulse or demand flow
2.
2
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3.
3
4.
4
5.
5
6.
6
7.
7
8.
8
9.
9 or higher
10.
Not sure
J.
How long does your portable tank last when you leave the house before it either
runs out of oxygen OR you run out of ONE portable battery used for your Portable Oxygen
Concentrator-(POC)?
1.
I don’t need to use a portable tank outside the house
2.
About 1 hr. or less
3.
Up to 2 hrs
4.
Up to 4 hrs
5.
4-6 hrs
6.
More than 6 hrs
K.
Does your current portable oxygen equipment limit your participation in activities
(exercise, social gatherings, work, etc…) outside of the home?
1.
I don’t need to use a portable tank outside the house- skip to question N
2.
Not at all-skip to question M
3.
Sometimes
4.
Frequently
5.
All the time
L.
Which activity outside of the home is MOST impacted by your need to use portable
oxygen equipment? Check only one
1.
My ability to go to Pulmonary Rehab or Exercise classes
2.
My ability to exercise and keep my oxygen saturations over 90%
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3.
My ability to socialize with friends and families
4.
My ability to work outside the home
5.
My ability to take care of my children and their activities
6.
My ability to travel
7.
My ability to go to my healthcare appointments
8.
you):
Other activities, (specify the activity limitation, not listed above, that is most important to
M.
In general, how long would you want your portable oxygen supply to last when you
are away from your home on a day-to-day basis (not including travel)?
1.
1-2 hrs
2.
3-4hrs
3.
5-6 hrs
4.
Other:
N.
How many missed work days in the past year do you estimate were due to your
oxygen issues (not due to your health or other factors)?
O.
1.
I don’t work outside the home
2.
Estimated number of work days missed in the past year due to oxygen issues:
What type of health/medical insurance do you have?
1.
Medicare Part A alone
2.
Medicare Part B alone
3.
Medicare Parts A & B alone
4.
Medicare and a supplemental insurance
5.
Private insurance (HMO, PPO)
6.
Veteran’s Benefits
7.
Disability
8.
Medicaid
9.
Affordable Care Act (ACA)
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10.
I don’t have health/medical insurance
11.
Other:
P.
How much do you ‘pay out of pocket’ each month for your oxygen and supplies (the
amount that your insurance or benefits don’t cover)?
1.
$0
2.
$1-$50
3.
$51-$100
4.
$101-$200
5.
Over $200
Q.
Were you aware exactly how much you would pay ‘out of pocket’ BEFORE you
received your oxygen equipment?
1.
Yes
2.
No
3.
Not applicable (you paid for equipment yourself or other)
R.
Do you pay for any of your oxygen equipment entirely ‘out of pocket’ because your
insurer does not cover it?
S.
1.
Yes
2.
No; skip to question T
Which equipment do you pay for? (check all that apply)
1.
Portable oxygen concentrator (POC)
2.
Extra batteries for my POC
3.
Liquid oxygen
4.
Regulators
5.
Special cannula (either softer cannula, or Oxymizer, or Pendant)
6.
Stationary concentrator (not the portable type)
7.
Portable compressed gas tank of some other type
8.
Other: (please specify)
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Oxygen Working Group: Patient Supplemental Oxygen Survey
T.
III.
How long have you had your current oxygen set up in your home?
1.
Less than 1 yr
2.
1-3 yrs
3.
More than 3 yrs
Information about the quality of service from your oxygen supplier
A.
Have you ever had any type of problems related to your oxygen? (service,
equipment, physician’s orders…)
B.
C.
1.
No; skip to Question E
2.
Yes
How often have you had any type of problem with your oxygen.
1.
I rarely have problems with my oxygen (every 6-12 months)
2.
I occasionally have problems with my oxygen (every 3- 5 months)
3.
I frequently have problems with my oxygen (weekly or monthly)
What types of problems with your oxygen have you had? (check all that apply)
1.
Equipment not working correctly
2.
Incorrect or delayed oxygen orders from my healthcare providers
3.
Delayed or unreliable delivery of oxygen equipment by my oxygen supplier
4.
Not being provided enough tanks for my activity needs outside of the house
5.
Lack of portable systems that I can carry/pull/physically manage
6.
Lack of portable systems that provide high enough continuous liter flow
7.
Not getting or having problems getting oxygen for my travel needs
8.
Getting enough portable oxygen so that I can continue to work
9.
I used to use liquid oxygen but my supplier no longer offers it
10.
I need liquid oxygen because it offers high flow and portability but it is not available to me
11.
The medical equipment company does not respond to my calls and / or needs.
12.
I received oxygen bills that were more than the amount explained to me.
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13.
Not being able to mix systems, for example tanks and POC, or small and large tanks
14.
Not being able to change oxygen companies
15.
Other: (please specify)
D.
What is the biggest problem that you would say you have with your oxygen (choose
only one)?
1.
Equipment not working correctly
2.
Incorrect or delayed oxygen orders from my healthcare providers
3.
Delayed or unreliable delivery of oxygen equipment by my oxygen supplier
4.
Not being provided enough tanks for my activity needs outside of the house
5.
Lack of portable systems that I can carry/pull/physically manage
6.
Lack of portable systems that provide high enough continuous liter flow
7.
Not getting or having problems getting oxygen for my travel needs
8.
Getting enough portable oxygen so that I can continue to work
9.
I used to use liquid oxygen but my supplier no longer offers it
10.
I need liquid oxygen because it offers high flow and portability but it is not available to me
11.
The medical equipment company does not respond to my calls and / or needs.
12.
I received oxygen bills that were more than the amount explained to me.
13.
Not being able to mix systems, for example tanks and POC, or small and large tanks
14.
Not being able to change oxygen companies
15.
Other: (please specify)
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Oxygen Working Group: Patient Supplemental Oxygen Survey
E.
Have you asked your oxygen company to arrange oxygen for you when traveling
within the United States?
F.
1.
Yes
2.
No; skip to question G
When you have tried to arrange travel with oxygen within the U.S., was it successful?
1.
Yes; my supplier set up the arrangements for travel
2.
No; I had to make my own arrangements or find a company at my travel destination
3.
Other:
G.
If there was one thing you could change to improve your home oxygen experience it
would be:
1.
Give me more portable tanks/supplies so I can leave the house more frequently and for
longer periods of time
2.
Help me by providing a POC when I travel
3.
Decrease my monthly co-pay
4.
Deliver my tanks/equipment when they say they will
5.
Provide me better quality equipment that is reliable
6.
Service or check my equipment on a regular basis
7.
Provide me liquid oxygen so that I can have higher continuous flow that I can refill myself
8.
Provide prompt and professional customer service when I need it.
9.
Other: (please specify)
H.
Have you ever called your oxygen supplier to report a problem with your
supplemental oxygen equipment?
1.
Yes
2.
No -skip to question J
I.
When you have called your oxygen supplier to report a problem, was the issue
resolved?
1.
The problem has always been resolved
2.
The problem has usually been resolved
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J.
you
3.
The problem has rarely been resolved
4.
The problem has never been resolved
Please select what best describes the person who delivers your oxygen supplies to
1.
The person is a driver who is unable to answer any questions about how to use my
equipment and does not test my oxygen saturations while I am using it either at rest or during
activity
2.
The person is a technician who can help me with problems about my equipment but does
not test my oxygen saturations while I am using it either at rest or during activity
3.
The person is a technician or respiratory therapist who can help me with problems about
my equipment and is also able to test my oxygen saturations while I am using it either at rest or
during activity
4.
Does not apply to me- I pick up my own oxygen tanks
5.
Not sure
K.
What is the longest amount of time you have had to wait for your oxygen supplies or
repair service to arrive after the scheduled appointment time?
1.
time.
My supplies or service technician always arrive on time or within an hour of the appointed
2.
1-6 hrs
3.
7-12 hrs
4.
13-23 hrs
5.
1-2 days
6.
3-7 days
7.
More than 1 week (i.e., 8-14 days)
8.
More than 2 weeks (i.e., 15-21 days)
9.
More than 3 weeks (i.e., 22 days or more)
L.
When you call your oxygen provider, about how long do you typically wait on the
phone until you can talk to somebody knowledgeable about your question?
1.
I never have to wait
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2.
15 minutes
3.
30 minutes
4.
60 minutes
5.
More than 60 minutes
6.
Even after waiting, I never or rarely am able to talk to somebody who can answer my
questions.
M.
Have you ever filed a complaint with 1 800 MEDICARE, a Medicare Ombudsman, or
the COPD Info Line to report a problem with your supplemental oxygen?
1.
No, I did not know there was a number or person to call
2.
No, I am aware of the number but I have never called to report a problem
3.
Yes I have called and filed a complaint
N.
If you called 1 800 MEDICARE, or Ombudsman or COPD InfoLine to file a complaint,
was the issue resolved?
O.
1.
I have never called to report a problem
2.
Yes I called and the issue was resolved
3.
Yes I called but the issue was never resolved
Which oxygen company do you use?
1.
Apria
2.
Lincare
3.
Pacific Pulmonary Services
4.
Not sure
5.
Other (write name here):
P.
Do you live in a “Competitive Bidding Area?” (An area under a particular type of
payment system to your oxygen company)
If you are unsure and would like to find out please click on
https://www.medicare.gov/supplierdirectory/search.html and enter your zip code.
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1.
1.
Yes
2.
2.
No
3.
3.
Unsure
IV. Is there some issue, other than those mentioned above, that you are having
related to your supplemental oxygen? Please describe the problem and what would
be most helpful to you.
_
____________________________________
Thank you very much for your time completing this survey!
If you are currently having difficulty accessing necessary oxygen supplies and equipment, you
can call the COPD Information Line at (866) 316-2673. The trained peer associations will
capture your concerns and assist wherever possible. Anyone who uses oxygen can contact the
Information Line but, if you prefer, you can contact the patient advocacy organization partner
you are most familiar with and explain your concerns.
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E3 Online Supplement: Sample Disposition
Copyright © 2017 by the American Thoracic Society
Page 54 of 56
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E4 Online Supplement: Numbers of respondents by state
Copyright © 2017 by the American Thoracic Society
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Page 56 of 56
Table E1 Online Supplement: Problems Yes/No by Geographic Regions in the United States* (n=1746)
Census Regions and Divisions of the
United States
Four United States Regions
Reported
Problems
n (%)
Total
Sample
n (%)
Yes
No
Northwest
158 (52)
305 (18)
305 (18)
Midwest
174 (48)
362 (21))
362 (21))
South
284 (50)
572 (33)
572 (33)
West
283 (56)
507 (33)
507 (33)
Yes
No
West Pacific
193 (56)
149 (44)
342 (20)
West Mountain
90 (54)
75 (46)
165 (10)
Midwest West North Central
60 (46)
69 (54)
129 (7)
Midwest West South Central
73 (43)
98 (57)
171 (10)
South East South Central
38 (48)
41 (52)
79 (45)
South Atlantic
173 (54)
149 (46)
322 (18)
Northeast North Central
114 (49)
119(51)
233 (130
Northeast Middle Atlantic
119 (54)
102 (46)
221 (13)
Northeast New England
39 (46)
45 (554)
84 (5)
Nine United States Regions
P Value
0.098
0.095
*https://upload.wikimedia.org/wikipedia/commons/f/f1/Census_Regions_and_Division_of_the_United_States.svg
Copyright © 2017 by the American Thoracic Society
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