New Study Examines Preferences and Treatment Options in Patients with Severe Emphysema

Posted on February 13, 2019   |   
Author: Bill Clark - Community Manager   |   

Sometimes making a decision is easy and sometimes it’s not. Often, the more major a decision, the more we may find ourselves weighing the pros and cons, the risks and benefits, before committing to a way forward.

This is often the case when faced with making a medical decision about treatment. In some cases, the options are very clear and the decision easy. In other cases, however, more risk may be associated with a particular treatment, especially if the treatment option is new, which can make the decision all that more difficult.

For individuals with severe emphysema, making decisions about treatment options is challenging because there aren’t that many treatment options available. Lung volume reduction surgery is one such option but not all patients are appropriate candidates and the surgery carries a high morbidity rate. Medical management, pulmonary rehabilitation and long-term oxygen therapy are also standard treatments, but patients often remain symptomatic.

Bronchoscopic lung reduction is another option, but until recently this treatment has only been available to patients outside the United States (US). In the summer of 2018, however, the US Food and Drug Administration approved Zephyr® endobronchial valves for clinical use in the US. The small endobronchial valves are inserted into diseased portions of the lungs. The “one-way” valves allow trapped air and fluids to escape from the diseased airway but prevent air from entering. By essentially reducing the volume of the lungs (as done similarly with lung volume reduction surgery) the healthier portions of the lungs expand better and function more efficiently—with the goal of helping patients breathe easier. The valves are inserted into the lungs via a bronchoscopic procedure (i.e., a flexible bronchoscope tube is inserted into either the mouth or nose and down the throat into the airways of the lungs).

In a recent study published in Chronic Obstructive Pulmonary Diseases: Journal of the COPD Foundation, patients’ preferences for emphysema treatment options—including the new endobronchial valves, lung volume reduction surgery and medical management—were measured. In “Patient Preferences for Endobronchial Valve Treatment of Severe Emphysema” the authors state, “[l]ittle is known about patients’ willingness to accept risks for new treatments that offer meaningful benefits.”

Individuals with a self-reported diagnosis of emphysema, 18 years or older with no previous lung volume reduction surgery and a 2+ score on the modified Medical Research Council Dyspnea Scale were recruited through the COPD Foundation’s COPD Patient-Powered Research Network.

Participants in the study were asked to complete a web-based survey which asked them questions about their preferences for 2 hypothetical interventions—lung volume reduction surgery and endobronchial valves—versus current medical management. “Variations in 5 attributes defined the 2 interventional treatments: improvement in ability to breathe and carry out day-to-day activities, frequency of hospitalized exacerbations, treatment type, risk of pneumothorax within 30 days of procedure, and risk of death within 3 months.”

The results indicated that on average, “respondents preferred the hypothetical interventional treatments over current treatment, and they preferred an interventional treatment with ‘removable valves’ [EBVs (endobronchial valves)] over ‘surgery’ [LVRS (lung volume reduction surgery)].” More specifically, “among 294 respondents, 51% always chose an interventional treatment option, while 19% always selected continued medical management. The most important change on average was moving from continued medical management (with no improvement in breathlessness) to an interventional treatment with improvement in breathlessness.”

The authors concluded that individuals “with severe emphysema perceive that a procedure with risks and benefits similar to the [endobronchial valve] implants is desirable over continued medical management or [lung volume reduction surgery].”

To read the journal article in full, click here:

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  • I had this conversation with my pulmonlogist and his reply back to me was an eye opener. He told me that i was most likely a strong candidate for this new valve, but he stated that he was worried about the danger of pneumothorax occurring. As usual I stop dead in my thought process and had to ask myself is the risk worth it? Never easy choices when it comes to COPD.
  • This is an in depth including adverse reactions. From ATS Journals
    "A Multicenter Randomized Controlled Trial of Zephyr Endobronchial Valve Treatment in Heterogeneous Emphysema (LIBERATE)"

    It is a difficult decision at best. I am heading to see Dr. Criner at Temple University Lung next Thursday. If I am a good candidate or not has yet to be determined. I have moments where I think to myself, why would I do it, why risk complications. Then I have moments where I am short of breath trying to do the simplest of things and I think to myself, I sure could use a break.
    • I don't know why that link doesn't show as a hyperlink but you can copy and paste the url in your browser, it will work.
  • It's always a good idea to try to objectively weigh risks vs benefits of anything and learn all you can about ALL the risks and benefits so you can figure out the best balance for yourself. When you function pretty well, the equation may point more toward not having any intervention at this time. If you're always very breathless and have optimized pulmonary rehabilitation, it may be time to start weighing possible benefits of having other treatments, including valves.

    The possibility of getting an air leak of having the lung collapse is definitely something to carefully consider and discuss. Good luck to those who are exploring this possibility.
  • These are always big decisions and there are so many tests and conversations to have before your pulmonologist approves and you agree to procedure.

    Dr Criner explained the risks, the mortality rate etc. Initially they were releasing patients the next day but they have changed that protocol and now keep patients for 4 nights for observation. There is risk of pneumothorax. In vast majority of cases this happens within the first 72 hours. By keeping patients in the hospital they are able to immediately react should that happen. If I remember correctly 30% of the patients will experience this. By keeping patients in the hospital longer the mortality rate dropped dramatically. I believe he said 1% but I am not certain.

    His assistant expalined the main reason why this happens and ironically it is an indication that patient will experience good results. When they insert the valves the lobe will slowly collapse and the other lobe will expand filling that space, just like LVRS. If the expanding lobe has good elasticity, it can expand too quickly causing a tear in the lung tissue and the pneumothorax. It is treatable, not fun but treatable. It is possible that it can happen days after being released but that is a very small percentage. So yes a lot to think about, a very individual decision.
  • I did that survey and had already read the journal article (and others over several years.) At one point I considered it at Yale (don't remember which procedure) and various reports from people in the study. I decided to decline participation. There is more to it than just the procedure. One has to consider other variables such as does insurance pay all costs/complications? Will you have personal support to get you back to hospital if you have any serious complication? How far from home is the provider - will you need lodging/food etc. for any length of stay? Does your helper work and can take off time to help you if there is an issue? I don't want to be a cynic but things happen and you need to consider all the items surrounding pre and post procedures before making a final decision.

    With my very severe copd and doing okay most days while 96% housebound, I manage to keep on ticking :) with my current regime - thought I was rapidly progressing but last drug tried, Daliresp, made all the difference for me. Make sure you have tried everything available. All invasive procedures have risks. This is just my opinion.
  • A lot to think about but while doing the research for the valves I have still not found information on mortality rates of the "14,000" European and Australian procedures performed and long term benefits, if any, that emphysema folks really gained. From a surgical procedure it doesn't matter, at least to me, they all have risk. To me the anesthesiologist has my life in their hands each time I enter a surgical suite and I have been there 14 times, some minor and some quite major but regardless I want to make sure they are there to keep an eye on me and make d*** sure I wake up when it is all over. Surgeon screw up- I will deal with that. Right now I just don't have enough to go on but the valves just seem so promising to me but tomorrow-no-next year-let me see where I am. Today I can still walk three miles a day-slower than last fall for sure. Still not on supplemental oxygen, will I need it next year, will I need more meds next month, will I even still be alive next month. Sometimes life just comes at you at none of it seems worth continuing another step. Yeah I know. Made the same comment to my VA primary and she said don't make me send you upstairs!!- No I don't mean it literally but my proverbial shoes have walked a lot of miles and not for sure I even have another decision like this in me but when and if I do I want to be damn well informed. Does that make sense to anybody but me???
  • I am taking good treatment every time.
  • I've just posted a comment elsewhere explaining why the valve procedure has not been advised for my husband. He has been on several inhalers over the past 20 years, and the newest one is Brimica. The specialist told him he must only have one puff a day, and for a while, that was enough to see him through the day. But as time passes and his lungs presumably are getting worse with age, (he is 78) he needs more than one puff, so he was taking one in the morning and one at night. The specialist knows about that and says if that's what he needs, just do it, but no more than two a day, as there are long term adverse side effects if you overdose on Brimica.

    Ken is now at a stage where two a day often is not enough. He'll have his first puff about 10 am, and needs another by late afternoon. By the time he goes to bed, he feels so bad he has a third puff. Our GP had to adjust the prescription to allow the chemist to dispense the extra doses, and I am presuming the GP checked with the lung specialist before he authorised it.

    Can anyone here tell me what the long term effects might be, on inhaling more than the prescribed dose of Brimica?
    • If you google Brimica, you'll find that it is a LAMA/LABA combination and is designed to be taken twice a day, so that's the first question I'd ask the doc: why did you prescribe less than is recommended? The thing he's not getting is an inhaled corticosteroid, so that's the next question: will he prescribe that? There are two combination meds available in the US that combine all three into one med taken once or twice a day. Inhaled steroids are also available by themselves.
    • Thanks for that Jean. I will copy your comments and show the lung specialist. I think Ken used to have corticosteroids but they took him off them for some reason.
      Not all the meds available in the US are available in Australia, so we just have to go with what is.

  • Update on my husband's inhalers. I asked the lung specialist about inhaled steroids and he said that Ken had been on those once, with the previous specialist. He agreed to try again, and since then has had many changes to see what works. This is a list of what inhalers he has tried since November 2020.
    Alvesco (Ciclesonide?)
    and Ventolin is always there, although Ken says he doesn't get any relief from that, but uses it four times a day as instructed by the doctor.
    We saw the specialist last week after having chest X rays done, for the first time in about 3 years. The lungs looked HUGE on the X ray - you can see where they are pushing against the diagphram, which accounts for Ken's difficulty in digesting meals. The doc. suggested eating small quantities of food during the day instead of one or two large meals a day.
    The doc said if Ken's breathing continues to cause distress, he might put him on morphine syrup, which he could take one teaspoon as often as needed, but if that didn't work, he could have a larger dose in one tablet per day. He explained that the morphine tricks the brain into thinking there is no breathlessness.
    Any comments from you good people on this forum?
    • Morphine is commonly used as you describe. People who take it have said that it does relieve their feeling of being short of breath, so they are more comfortable.