Dr. Goldstein's Response

[Blossom/Jackie W.]

I put this under a seperate topic so that all of our COPDer friends would see it; not just our immediate family.

This is the response I received from Dr. Goldstein re: "Effect of Oxygen on Health Quality of Life in Patients
withChronic Obstructive Pulmonary Disease"
and the hullabaloo it created from his recent study and the article written by the globe & Mail..... www.theglobeandmail.com/servlet/story/RTGAM.20070815.wlcopd15/BNStory/specialScienceandHealth/home

His response.......

"Dear Jackie-it was nice speaking to you yesterday. It might be helpful
for your network if I make a few comments on the findings of this study
and their implications.

We know that oxygen-in people with COPD who have low resting oxygen
levels-can be life saving. The more hours the better. The flow rate is
set after measurements of the oxygen saturation (pulse oximeter). Oxygen
is treated as any other drug- measured, prescribed and used according to
physician guidelines. This study does not apply to such individuals.

We know much less about people with normal resting oxygen levels, in
whom oxygen dips during exercise, returning to normal at rest. Although
they sometimes feel better with oxygen, the way a person feels may not
be the most accurate way to identify the people most likely to benefit
from oxygen, provided only for exercise.

Some patients do walk or cycle further when receiving oxygen compared to
air. This happens in the exercise laboratory. The question is-does
providing oxygen, for use during activities that lead to being short of
breath, improve quality of life?

In this report, we asked patients with COPD to agree to receive either
oxygen or air (not knowing which they were receiving) and then every 2
weeks we went to their home and changed the mixture. Each time we went
to their home, we also measured how far they walked in 5 minutes and how
they rated their quality of life (using detailed scales of
breathlessness, fatigue, emotional function and mastery). Thereofe,
each person answered these written questions 6 times (every 2 weeks for
12 weeks) and we were able to have a close view of how they felt,
knowing that they were sometimes receiving oxygen and sometimes
receiving air.

Only a few patients experienced a difference in quality of life, when on
oxygen. Most did not identify a difference. We think that these are
the folks who would be most likely to benefit from oxygen being
available for when they get short of breath. The oxygen wasn't used
very much, even by them- rarely more than 1 hour a day. We are still
analyzing this information.

Out recommendation is to consider testing to find those who benefits and
to save those who do not, the cost, the inconvenience and for some-the
awkward feelings-associated with carrying oxygen.

The study was funded by a research grant from the Ministry of Health.
However, it was from the research not the policy arm. This means that
we were entirely responsible for the question asked and the study
design. They only see the results after they have been submitted for
publication. We are very careful on this point so that the information
we get is not in any way affected by who is funding the study.

I hope these comments are useful. We have had many years of experience
in trying to find the best management for individuals with lung
conditions and will continue to do our best.

Dr. Roger Goldstein"

[John]

Thank You Jackie '
At least they are trying to improve our lives as best they can .Please thank the Good Doctor if you have contact with him for his taking time to respound

[larrynz]

The study was funded by a research grant from the Ministry of Health.
.............................................................
That was the line I expected to see, it says it all.

[maryaz]

Larry: This is important to me. Would you explain what you meant and either post, PM or email. Thanks. I really want to understand. I think I might be feeling bad about this post since seeing 2 short messages but this is how I feel and I don't know any more and unless I post, I won't learn. I almost want to apologize but I cannot.

I am writing how I feel about Dr Goldstein's response, before reading what anyone else has to say. I don't want to be influenced by someone else's words. I think it is really important to correct the bad press. I do feel that studies to learn more about the use of oxygen is needed. I cannot say that this response has changed my feelings or helped me understand the initial article. Actually, it has created more questions.

I think it makes a big difference the level of COPD function that the patients are at and that needs to be reported. There is a huge difference between Moderate/Mild and Severe/Very Severe patients. I would surely think saturation levels have to be considered. Some people tolerate low readings but it stills has negative impact on the body.

I thought these people were wearing the oxygen or the air and then questioned. As I read on, it sounded like they only wore it when they felt they needed it. Quote from article: "The oxygen wasn't used very much, even by them- rarely more than 1 hour a day." A lot of people need it but don't think they do.

Another thing that doesn't seem to set with my experience is this paragraph. Quote: "Out recommendation is to consider testing to find those who benefits and to save those who do not, the cost, the inconvenience and for some-the awkward feelings-associated with carrying oxygen."

Most the people I know, dread being put on oxygen and for the reasons mentioned. It appears that most the people on it really need it. Many do not use it even if it is prescribed. From listening to them, they are pushing themselves. I don't see how an honest study could be done without following these people or at least their saturation all day. Just like a sleep study. If these people are not severe then they probably don't need oxygen now but if they are, then how do you know if their saturation is at a sufficient level.

I get great numbers sitting and I don't like wearing oxygen but I need it when I move around. I don't feel better or worse with the oxygen really. Definitely cannot determine use of o2 just by way someone feels. Every organ in our body and especially the heart will suffer if our saturation is too low. Quote: "Although they sometimes feel better with oxygen, the way a person feels may not be the most accurate way to identify the people most likely to benefit from oxygen, provided only for exercise."

You get more SOB running than walking. So, seems you would get more SOB exercising than sitting. I am for studying the use of oxygen more. I think it is real important but something in the approach here does not sound right to me. I am only an oxygen user and not a scientist or doctor. Maybe part of the study is that looking at saturation is wrong. I don't think that could be but that would handle a lot of my questions.

"Some patients do walk or cycle further when receiving oxygen compared to air. This happens in the exercise laboratory. The question is-does providing oxygen, for use during activities that lead to being short of breath, improve quality of life?"

It seems the answer to the above would be yes it does because otherwise you will be doing activities at a lower level than your body can handle properly. If your heart goes out, what happens to your quality of life. Sarcasm but don't know how to word this.

I don't feel this answered the concerns and now the public has this article. I received notices of this article in several difference sources, not just Globe & Mail. It is in all the following links and sure plenty more: This is what happens with all article and wish with COPD they would be more careful what is printed. I deleted several of them the other night.

www.sciencedaily.com/releases/2007/08/070815085437.htm

www.newswise.com/articles/view/532328/

www.medpagetoday.com/Pulmonary/SmokingCOPD/tb/6423

www.eurekalert.org/pub_releases/2007-08/ats-aor080907.php

Now I will keep an open mind when I read others opinions. Thanks for sharing and letting us share.

[bobbioh]

Mary You bring up so valid points. I also thought O2 was mostly for our o2 starved organs. Now Im totally confused. But I do know when I had my sleep test done I had no O2 all night because he said I never dropped below 88 well I tell you what I felt like crap for a couple days after the test. Me personaly I know the O2 helps me. bobbioh

[cheryl]

Thank you Jackie

[larrynz]

I am not on oxygen so my thoughts have been formed by comments of others.
Now we know the value of exercise and keeping fit, so if oxygen allows a person to do more and become fitter that has to be good, does it not?
As I said I do not use oxygen, at rest I am around 95%, a 6 minute walk test brings me down to 88%, so I am not so bad, I have no idea what my oxy levels are when I am out for a walk, I do know walking the dog is something I can only just do. One person I know who used oxygen and has worse copd than me can now outperform me, so his quality of life has improved. The good Doctor seems to doubt that.
Certainly more testing is needed, it is surprising the Doctor drew any conclusions from such a small study, in particular as it flies in the face of currant medical wisdom.

[shelley]

Much of this is confusing. Maybe it's best to say that we are all different. Like Larry my resting sats are between 93 and 96 without O2. However, on my 6 min. test, I desat to about 82 within the first 2 minutes and was therefore prescribed O2 - for which I am thankful as I found out recently that I am already showing minor heart damage from lack of O2. I am not deconditioned, in fact I continue to hike, canoe, go to the gym, etc. For some reason, I just desat upon movement. In fact, it would seem that over a year ago the good Dr. G. wanted me on O2 for sleep as my sat levels while sleeping dropped below 90%, 97% of the time I was sleeping. Unfortunately, his report got lost and I wasn't put on O2 for anything up until mid June of this year. I will say that there is no way on earth anyone is going to take my O2 from me, stigma or not, I'd like to live awhile and that means not only breathing better but also protecting my heart. Had I known that I could have gone on O2 earlier, if I paid for it myself, I certainly would have done it to protect my heart. This study has put a bad taste in many mouths and has served to, once again, put the wrong picture out there. Honestly, it ticks me off generally, much like the TV ads that show people with severe "COPD" dancing and bowling without O2. I guess, like many other studies that are published, we have to nod our heads to "freedom of speech" and remember that we can utilize the same "rights" in speaking up ourselves.

[Blossom/Jackie W.]

Shelley; I did find Dr Goldstein very approachable and sincerely concerned about his current COPD patients. I can only suggest you actually "talk to him" about your confusion & concerns. (He did offer that up to any of his patients that wanted to discuss it BTW) Same thing for you Muin (sp?)
I'm gonna post the following here as well as elsewhere....

As I mentioned previously I DO NOT feel qualified to address this issue becasue I'm not yet on oxygen. You who are responding would have a better grasp of the situation.

Many of these Dr's are members of Canadian, American, International Fellowships and organizations ...they oft times follow each other's lead in various areas. Does it mean it might be a precursor of "things to come" with regards to prescribing of oxygen regardless of the country? I don't know. But apparently it IS being studied or looked into further.

Martha's very right in my opinion in terms of the "interpretation" of things by the media. I've read some things re: COPD that I just cringe at..... we all have.

As for Dr Goldstein....the first time I met him was this past week and it wasn't on a patient/Dr arena. I relayed the flap that had occured from his study. He offered, (I didn't ask of him), to address the COPD community. Thus this post.

I don't know him from Adam but I did get the sincere impression (and I read people quite well) that he was concerned about the issue and how it was/is perceived and his patients. (According to him he has great patients BTW)

I merely approached the subject with him since the opportunity presented itself. I'm only a messenger in this regard but I do think that you've offred some serious feedback/insight.

[larrynz]

they oft times follow each other's lead in various areas.
.................................................................
I agree Jackie and its the bit that I find a worry, I like to think that when and if I ever need oxygen it will still be there.
A big question in my mind is what standards is he looking at, in NZ you have to be much sicker to qualify than the US. Our doctors may well say that the US over prescribes?

[LindaNY]

Thanks Jackie, I'll run this by my pulmo when I see him in Oct.

He did say O2 was used to prevent organ damage in severe disease, but never mentioned that it helped SOB. It will be interesting to hear what he thinks.

[Blossom/Jackie W.]

I agree with you Larry; I feel the exact same way. Linda I did ask about that particular thing....organ damage or preventing of same with oxygen. He told me actually there's no "proof" of it. In the same breath he also said that there was a lot they DIDN'T know about the "in-between" type aeas of COPD.

[LindaNY]

It makes me NUTS!!!

Well, I guess that's why it's called medical "practice".

[shelley]

Jackie, I agree with what you have said. Dr. Goldstein, in my meetings with him, has always showed genuine interest and care of his patients. He has always maintained a positive stance and been very supporting. This is why I was so taken aback by his paper and felt that somehow it must have been misquoted or misunderstood. However, I am concerned about how this paper could be misinterpreted by others in the field...we'll just have to wait and see if there's any fall out there. Hope not! We are starting to see this disease talked about more and more and with that comes a certain amount of concern that what is being said is accurate. We need the publicity and we most definately need to see more research done, but I think we must always be as vigilant as we can in working towards a positive and accurate portrayal; keeping in mind that within this disease are far more variations than even we have seen...so many that still have not been diagnosed or are not yet getting the help they need. I think its fabulous that you were able to approach him openly about this and that he responded so quickly. There is much to be said about that. BTW, Muin and I are one in the same. Just forgot my password once.

[maryaz]

Many good points but still spectulations. I do agree that he sounds like an Okay doctor for sure. We get so much bad press that we cannot reach anyone to really talk to. This was a new kind of adventure. Thanks Jackie for all you have done and are doing.

[Blossom/Jackie W.]

Absolutely my pleasure.....another learning curve for me and you're right.....there's something to be said about a Dr that would go out of his way to address the COPD community when I told him how many folks he "ticked" off.

[the bear]

I am not on oxygen yet so my comments are not really valid.
What I do know is that in an emergency situation when I go to ER short of breath they put me on oxygen and in a little while my heart rate drops to normal and I feel okay again.
IMHO a study done on only 27 people is not a comprehensive test at all, especially in light of the fact that all those tested were not as yet oxygen users.
Also as this test was funded and commissioned by the ministry of health, personally, and this is my personal opinion only, it would stand to reason that the ministry would find the use of oxygen of little benefit. They do not want to pay for oxygen therapy. bear.