Portable
Oxygen: A User's Perspective
Survey of
Educational Resources
Available to Oxygen Users
IMPORTANT
The information provided here is for
educational purposes only and it is not intended, nor implied, to be a
substitute for professional medical advice. Always consult your own
physician or healthcare provider with any questions you may have
regarding a medical condition. |
Background
In August 2005 we
conducted a survey of oxygen users who have Internet access. The
purpose of the survey was to determine where these oxygen users learn
what they know about long-term oxygen therapy (LTOT).
This survey was administered five years after the 5th Oxygen Consensus
Conference. Five of the sixteen recommendations from that Conference
(1, 3, 4, 5, and 13) focused on patient education (see Recommendations
of the Fifth Oxygen Consensus Conference). The most
far-reaching recommendation was “to assess, improve, innovate, and
standardize LTOT education.”
During the six years since that Conference, the Internet has grown to
the point that it provides
an exceptional source of information about oxygen therapy, from oxygen
providers, manufacturers, and fellow users.
So, six years after the Conference, what is the status of patient
education? To answer this question, we surveyed oxygen users to find
out what they knew and where they learned it. This paper presents the
results of that survey.
Method
A survey, containing 25
questions, was distributed to members of three Internet
lists—COPD-Alert, COPD Support, and EFFORTS during the
first week of August 2005. The 157 oxygen users responded by emailing
their answers to us. Subsequently, three additional questions were
distributed to which 31 users responded. A copy of the survey, with
compiled and tabulated answers, appears at the end of this paper.
Results
Thirty-seven percent of
respondents identified Apria Healthcare
as their supplier, the same
percent that identified independent suppliers. Twenty-five percent
identified Lincare and 2%, American Home Patient.
As might be expected, 97% indicated that the Internet helped them
understand their oxygen needs. Most respondents were on oxygen for more
than two years (73%) and were covered by Medicare for their oxygen
(66%).
Fewer physicians wrote prescriptions for oximeters (52%) than permitted
respondents to use oximeters to establish oxygen settings (79%),
probably because only an insurer other than Medicare will reimburse.
Only
33% of respondents’ suppliers sold or rented oximeters to their
patients.
Suppliers trained 77% of respondents on how to safely handle oxygen and
oxygen equipment. Fewer (49%) provided training on how to maintain
oxygen flow during a power outage, and still fewer (33%) trained
caregivers. When asked to compare the quality and quantity of useful
information they received about oxygen therapy, only 9% indicated that
suppliers did a better job than did support groups either on the
Internet or in their communities.
Suppliers’ most helpful resource is the person who delivers the oxygen.
Sixty-nine percent of respondents asked questions of that person and
79% thought the responses were correct. Only 53% of respondents
received manuals with the oxygen equipment they received. Ninety-three
percent of them read the manuals at least once and 89% found them to be
valuable resources for learning how to safely use the equipment.
Conclusions
The survey confirms
what we believed—that the Internet is a primary source of information
about oxygen therapy. Users belong to lists where they can get answers
to questions they raise from fellow users and professionals. There are
websites devoted to managing lung diseases and the use of oxygen.
Reports on clinical studies are published on the Internet.
Manufacturers market their oxygen products directly to patients at
their websites. These websites also contain patient-oriented
information on how to use the products and printable user manuals for
their equipment.
A major topic discussed on the three lists is the oximeter and its
value to oxygen patients. Oximeters are noninvasive and require no
prescription. Some insurance companies will share the purchase cost
with the patient if a physician prescribes the device. Medicare will
not. This may account for fewer respondents asking their physicians for
a prescription (52%) than physicians who permit respondents with
oximeters to control their own oxygen settings (79%). This change in
the authority of managing oxygen settings seems to have not reached the
suppliers. Few of the respondents (33%) have suppliers who sell or rent
oximeters.
As professionals who have the most frequent contact with oxygen
patients, suppliers are expected to provide the majority of training
for their patients. According to the respondents, this is not the case.
Only 4% of respondents have suppliers who provide continuing education
by publishing newsletters. Operation manuals accompany new equipment
half (53%) the time. Only 49% of suppliers are teaching patients how to
handle emergencies. When oxygen stops during a power outage and the
patient cannot personally take action, it is the caregiver that needs
to know what to do. Yet, the suppliers of only 33% of respondents train
the caregivers.
There is a large group of those over 65 on oxygen therapy who does not
have access to the Internet. A recent survey showed that only 31% of
seniors over the age of 65 have computers in their homes. The situation
is even worse for those seniors with annual income less than
$20,000—fewer than 15% are likely to have computers in their homes.
Low-income seniors make up the majority of the elderly on Medicare and
the preponderance of former smokers. These seniors have less education
and are less likely to learn by reading. Low income can equate to poor
reading skills. Research on how poor readers learn shows that audio and
video supported training materials are significantly better than
reading alone. For this reason, training materials must be carefully
designed accordingly.
Recommendations
As respondents tell us,
the Internet provides significantly more quality information related to
oxygen therapy. Take the Internet away, and these respondents would
have to rely on suppliers, physicians, and local support groups for
their education. Such is the case for the majority (69%) of Medicare
patients who do not have access to the Internet.
To reach this
majority,
we recommend the following be implemented.
1. Suppliers provide one-on-one training to patients and caregivers on
emergency procedures.
2. Suppliers and
physicians should jointly facilitate ongoing training through
newsletters and mediated presentations.
3. Suppliers provide
one-on-one review of manuals delivered with each piece of equipment.
4. Suppliers provide
sales and rentals of oximeters to their patients and provide oximeters
at no cost to patients who cannot afford them.
5. Physicians provide
one-on-one training to patients on the use of the oximeter.
The authors thank Vlady
Rozenbaum, Ph.D. for reviewing the report, and the management of
COPD-Alert, COPD-Support, and EFFORTS lists for supporting this survey.
The Survey
N =
157
Questions
with
percentage of YES responses.
1. Who supplies your
oxygen? [Apria = 37%, Lincare = 25%, Amer.Patient = 2%,
Other = 37%]
2. Have you been on
oxygen more than two years? [Y or N] 73%
3. Is Medicare your
primary insurance for oxygen? [Y or N] 66%
4. Did your prescribing
physician help you select your home and portable oxygen systems? [Y or
N] 31%
5. Has your physician
or a respiratory therapist re-evaluated your oxygen settings within the
past two years? [Y or N] 60%
6. Has or will your
physician prescribe an oximeter? [Y, N, or leave
blank] 52%
7. Does your physician
permit you to use an oximeter to establish your own oxygen settings?
[Y, N, or leave blank] 79%
8. Does your supplier
sell or rent oximeters to its patients who have a prescription for it?
[Y, N, or leave blank] 33%
9. Has your supplier
shown you how to safely handle oxygen and oxygen equipment? [Y or
N] 77%
10. Has your supplier
shown you the steps you should take in an emergency, such as a power
outage? [Y or N] 49%
11. Has your supplier
shown your caregiver how to help you in an emergency? [Y, N, or
leave blank] 33%
12. Is your supplier's
emergency telephone number posted on all its equipment? [Y or
N] 71%
13. Do you discuss your
oxygen needs with the person who delivers your oxygen? [Y,
N] 69%
14. If so, has that
person always provided you with correct information? [Y, N, or
leave blank] 79%
15. Does your supplier
regularly send you a newsletter? [Y or N] 4%
16. If so, does the
newsletter help you better understand your oxygen comforts and needs?
[Y, N, or leave blank] 75%
17. Did user manuals
accompany each new piece of oxygen equipment? [Y or
N] 53%
18. Have you read the
manuals at least one time? [Y, N, or leave
blank] 93%
19. Do the manuals
provide you with complete information on how to safely use the
equipment? [Y, N, or leave blank] 89%
20. Are education
events held in your community to help those with COPD and those on
oxygen? [Y, N, or leave blank] 29%
21. If so, do you
attend such community events? [Y, N, or leave blank]
62%
22. Have you had
Internet access for more than two years? [Y or
N] 98%
23. If so, do you use
the Internet to help you understand your oxygen needs? [Y, N, or
leave blank] 97%
24. Do you benefit from
information provided by support groups either in your community or on
the Internet? [Y, N, or leave blank] 97%
25. Does your supplier
provide better answers to your questions than the other resources
available to you? [Y, N, or leave blank] 9%
Supplementary
Questions
N = 31
26. Did you attend the 12-week Phase II Pulmonary Rehab program?
[Yes or No] 68%
27. If so, did you attend or are you currently attending a Phase III
program? [Yes, No, or blank] 42%
28. If so, did either phase provide you with a better understand of
your oxygen comforts and needs? [Yes, No, or
blank] 76%
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© 2005 Copyright
Peter M. Wilson, Ph.D.
Founder of PortableOxygen.org
You have permission to
print this document for your personal use. You also have permission to
print, copy, and distribute this document to oxygen users and their
caregivers.
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