EFFORTS — PO Box 20241
Kansas City, MO 64195–0241
Ph: 1–866–END–COPD
The information on (or referenced by) the EFFORTS’ website and discussion lists is not intended or implied to be a substitute for the professional medical advice of your own healthcare providers.

As a patient advocacy group, we rely on your contributions/donations to maintain the mail list group, this website, and help board members attend conferences and to increase our participation in research.

When you shop at Amazon.com, please use this link to help support our EFFORTS organization, #StartWithaSmile at:


Amazon sends collected donations to charities quarterly. Thank you for your participation.

Due to the generosity of EFFORTS, I was able to attend a Symposium in Orlando during the week of March 31, 2011, titled Long Term Oxygen Therapy: Separating Fact from Fiction. This event was jointly sponsored by Tufts University School of Medicine and Ganesco, Inc, which is a provider of continuing education events.

My report begins below - Karen D in FL. To contact Karen, send an email to efforts-request@effortslist.org

Long Term Oxygen Therapy: Separating Fact From Fiction

March 31 - April 1, 2011 This symposium was sponsored by Tufts University of Medicine and Genesco (a continuing education company) and the speakers were a mix of practicing and teaching physicians and RTís and an RN.

There were 9 presentations, plus 3 workshops during this 1 Ĺ day event, with some of the discussions more technical than others, Iíll do my best to summarize each speakerís presentation.
  • Dr. Barry Make - Overview of Current Obstacles and Challenges in Oxygen Therapy:
  • LTOT usage must start with the user - Reasons to use = ďGood life, longer life, reduce burden of disease, more active, feel betterĒ
  • So - why do COPD patients NOT use: ďNo instruction given, donĎt understand why they need it, afraid to run out when using portable devices, embarrassed to be seen, too heavy to carry, carts too bulky, etcĒ
  • 27,000 to 54,000 deaths per year could be prevented if patients would use their O2
  • Only 32% of hypoxic patients even receive O2
  • There are 1 million Medicare patients on O2 costing $2 billion a year (and 71% of Medicare patients are on O2) - but why should insurance companies continue to pay if patient not going to use ambulatory O2?
  • No real guidelines to prescribing liter flow - from the NOTT trial, determined that saturation at rest should be over 90%, so whatever that liter flow works out to be; need to add one liter to that for night; add another when exerting.
  • But - cannot ethically perform another NOTT trial to see if those are still valid liter flow guidelines (for NOTT patients were randomly assigned to either 24 hr/day O2, or nocturnal O2 only) since we now know that O2 is beneficial - could be harmful to those only receiving nocturnal O2.
  • Patient outcomes with O2 use are less dyspnea, better quality of life and more activity.
  • The 6th O2 Conference Consensus was that there must be more conprehensive education, more patient caregiver education, greater access to LTOT, clinical practice guidelines and titrating flow devices
  • Dr. Nicholas Hill - Pathophysiology of Chronic Hypoxemia
  • This presentation used lots of diagrams and slides to explain the way that O2 is transported through our body - stresses on the O2 pathway are exercise, respiratory and/or cardiovascular failure.
  • With COPD we have hypoventilation, a ventilation/perfusion mismatch and a diffusion abnormality. Pulmonary Rehab and supplemental O2 should be prescribed.
  • Chronic hyopoxia causes inflammation, which in turn causes other organ damage and eventually mortality
  • Hypoxic Pulmonary Hypertension is partially reversible in patients with COPD. Chronic Hypoxia activates TNF in underweight COPD patients - he called it the anorexic factor.
  • Physicians donít know what to monitor to determine if O2 is adequate to do sufficient tissue oxygenation. Eventually chronic hypoxia leads to cardiovascular adaptations leads to pulmonary hypertension/polycythemia
  • Dean Hess, Phd, RRT - Current Indications for Oxygen - looking at the evidence
  • In the NOTT Trial, all were also on theophylline and an inhaled beta-2 agonist
  • Showed that continuous (described as 17-18 hours per day) O2 had greater survival rate than nocturnal only
  • LTOT is the most cost effective therapy for COPD patients with severe hypoxemia - cost of $16,124 as opposed to $140,000 for LVRS (Lung volume reduction surgery)
  • Do patients need to be on O2 forever, once prescribed? Some do not, but most never get retested, so stay on for life. If patient is not hypoxic at rest, maybe they donít need LTOT? Maybe only if stats drop when ambulatory? The evidence isnít there to show whether OP2 is beneficial for exertional desaturation or not.
  • Thereís NO benefit if patients arenít motivated to use, if equipment is too cumbersome.
  • No data to show what causes nocturnal desaturation - we donít know what itís due to. There are no studies that are able to show any benefit for COPD patients using only nocturnal O2. Doesnít mean there IS no benefit - just that there arenít any studies.
  • Dr. James K Stoller - Overview of Oxygen Delivery Devices
  • Mentioned Stationery Concentrators & POCís, Compressed Gas & Liquid Systems and Transfilling Systems.
  • Gas - somewhat expensive for provider; Liquid - most expensive; and concentrators (least expensive in long run, but can run up to $168 to $360 a year for patient because of electricity)
  • When prescribing, script should specify type of delivery and liter needed for rest, sleep and exercise. Medicare requires yearly recertification but NOT retesting
  • When patient retested 2 months after exacerbation, in 43% of the time, they needed a lower rate of O2. Patients should be retested 90 days after discharge from hospital. Intermittant flow devices (pulse) must be titrated, as not all are equivalent.
  • Recommendation - patients be evaluated for a SPECIFIC device - should be the same one they use at home.
  • Dr. Richard Casaburi - Can Oxygenation be Maintained over 24 Hours - What is the Reality?
  • How to tell if patient really is using their O2? Hours concentrator is running not accurate, since it does not mean itís being used - could be just left on but not in use. Gas tank usage requires counting number of tanks, knowing if tank was totally full when delivered, if it was totally empty when returned to DME, and what type of pulse device and liter flow. Liquid - would need to know the weight and what might have evaporated. So - almost impossible to measure if O2 being used continuously.
  • One study followed 22 patients. Average used O2 18.9 hours a day. Of that time, 16.4 hours were stationary - only 2.5 hours were ambulatory. A concentrator keeps patients saturated better than ambulatory devices.
  • Must educate patients via pulmonary rehab. And if way is found to monitor adherence, need to remove ambulatory O2 from those who are not using it - would be more cost effective.
  • Need to assure proper scripts, need testing centers, more reliable conserving devices - must test on a WIDE variety of patients
  • And - this physician believes in increasing the availability of personal oximeters.
  • Dan Easley & Kim Wiles, BS, RRT - Decreasing COPD Rehospitalizations - what the data tells us
  • MedPac recommendations are to hold back payments to hospitals when patients are readmitted for the same diagnosis within a certain time frame (canít remember what that was - 30 days?)
  • $10 million has been allotted to chronic disease management to help patients live a good life and reduce the burden of their disease (on them and on society)
  • In PA, COPDíers are the 2nd largest group who are readmitted to hospitals. Should be more follow-up of patients in-home. DMEís should provide devices that are matched to each patient - not all are alike
  • At discharge, patients should be referred to rehab and followed up
  • Home Health Care - RTís need to be able to go into homes with the goal of educating and enforcing good breathing skills, exacerbation control, nutrition, etc.
  • Itís important to have accurate titration for O2 saturation - assess dyspnea, encourage independence.
  • Important to have way to monitor patient at several times after discharge - DASH software program, in use in PA (?) does that
  • ***An active patient is an independent patient**
  • The RT should be able to be an educator, motivator, coach and advocate.
  • How to get patients into pulmo rehab soon after hospital discharge? Nutrition training needed for those patients with BMI <22 - they comprise Ĺ of rehospitalizations
  • The future of home care should be patient centered vs. equipment centered!!
  • Friday morning began with 3 workshops - we patients were asked to participate in one titled ďOxygen Conserving SyatemsĒ moderated by Dean Hess PhD, RRT and Kim Wiles, BS, RRT
  • Thursday afternoon, while sitting and listening to the various speakers, I had been hooked up to a device that was measuring the following: size of O2 dose being delivered from my SeQual, heart rate, O2 saturation, pulse, # of breaths per minute, etc.
  • Friday morning they hooked me up again and asked me to take a walk. The device showed that my SeQual was very good at delivering 2 lpm, but that my heart rate was increasing, and that my saturation was decreasing (to below 88 at some points)
  • Then - I took the same walk while using a gas canister with a ďSmart DoseĒ regulator. Very same walk - but as my heart rate increased, the device increased my liter flow, decreased when it sensed I didnít need as much, and I never was desaturated!!
  • I WANT THIS!! Seriously - itís awesome, and I do intend to look into it.
  • There were several companies exhibiting various devices - gas, liquid and POCís. The symposium participants were each given a cannula and asked to hook up to the devices to experience the different feel. I am used to a fairly forceful pulse, and felt as if I wasnít getting any O2 from some of the devices, but the manufacturers are trying to reduce the sound of the pulse, since it bothers some people.

  • Dr. Casaburi and Dr. Frank Sciurba debated ďLong-Term O2 Therapy - We know enough to treat effectivelyĒ
  • Pros: Are the LOTT and MRC Trials of the 1980ís sufficient - Yes. while we are unaware of HOW the mechanism works to prolong lives, it does work and it would be unethical to test groups without O2. BUT - more US patients in the US are on LTOT then anywhere else in the world, costing $3 billion a year. So - we MUST recertify patients and if they donít qualify again, remove them from O2. Must monitor adherence, also - if not ambulating, remove portable O2
  • Many LTOT patients arenít adequately oxygenated. Need recertification centers to recertify and to test on dev ice that patient is using.
  • O2 conserving devices need a WIDE range of patient trials - not happening now
  • Right now, patients donít adhere to O2 therapy. Should be encouraged, maybe even required, to attend classes that feature O2 education so will understand importance. Pulmonary Rehab very important
  • Cons: Current standards are based upon a very SMALL number of very severe males. Not many women in trial - there are many different types of COPD - need to do testing on similar groups to see which patients improve with O2
  • There are so many co-morbidities, such as weight loss, muscle dysfunction, cardiovascular disease, osteoporosis, depression and cancer that need to group similar patients together to do testing
  • COPDíers are more likely to die of a comorbidity than of COPD
  • COPDíers with more emphysema to their diagnosis are more apt to die from COPD
  • Feels we donít know enough yet about hypoxemia in COPD
  • ***Vascular disease can be caused by increases of supplemental O2 and that then kills more COPD patients***
  • O2 at 2 lpm for 18 hours increases oxidative stress in COPD
  • O2 can harm some subgroups (didnít specify which) and some studies indicate that not all nocturnal O2 patients benefit
  • Benefits of O2 are poorly defined in moderate hypoxemia, in those who desat during exercise only and in nocturnal desaturation
  • Trina Limberg, B, RRT & Andrew Ries MD (with John Walsh, COPD Foundation and Kathleen Lindell, PhD RN
  • Supported previous recommendations from the Consensus Conferences regarding education. Clinicians and patients need to clearly understand the problem and know of options for solutions. Physicians and other health care professionals must know more about how equipment works, what options and available and how to monitor and ensure quality LTOT
  • Writing the proper O2 script is difficult without testing - need standard protocols to test at rest, at exertion, when going about daily living tasks, and at exercise. None exist now
  • Patients are poorly educated on use of O2 - complying with the script is difficult.
  • Need to assess patient expectations for reducing dyspnea
  • Need to address myths about O2 ďI must be closer to death -canít leave homeĒ address public embarrassment & logistics of storage & portage
  • Writing an order doesnít make it happen - needing O2 doesnít make it any easier to use. Patients must receive acknowledgement, respect, compassion and need to practice. Need to learn and need support
  • Should patients be told itís OK to self-titrate? And when? Are there patients who should NOT do self-monitoring
  • When should patients be re-assessed?
  • John Walsh took a little survey of the total 5 patients present. NONE of us had had any instruction in use of our O2. 3 use liquid, one uses canisters and 1 uses POC to ambulate. All patients learned from patient support sites, such as EFFORTS, and none have been retested recently.
  • Patient organizations must continue to work with clinicians, RTís and DMEís etc. to educate patients
  • COPD Foundation is willing to try to help with clinical trial funding
  • Changing Perspectives: Onward - What can and should we be doing? All faculty members participated in this
  • Important to continue to work on getting respiratory care paid for in the home
  • Need to set goals of LTOT given current evidence.
  • What endpoints to target for O2 script?
  • What technology in order to achieve those endpoints most cost-effectively
  • How best to establish that targets are being reached
  • And - since there are fewer and fewer smokers, in the future the average COPD patient is predicted to be poor, with no insurance and may not be able to get equipment, etc. How to plan for this?
  • Dr. Hill & Dr. Make - Closing remarks - went over Conference Objectives.