On The Web
Remember that our web site, http://www.perf2ndwind.org, is now up and running :) . We will archive our newsletters and eventually get all of Dr. Petty's letters archived also. We will start with those that he wrote in the past 2 years and that should keep you busy for awhile!
Speaking of web sites, check out http://www.papapoo.com with its great slogan of "SOB is better than NoB at all." We think this site by Bill Powell will amuse you, and please you with its positive attitude.
Excerpts from a talk given by Catherine Ramirez, BS, RCPT,
to the Southern California Society of Pulmonary Rehabilitation.
In April's Second Wind you read an article about NETT and Lung Volume Reduction (LVR) surgery written by thoracic surgeon Dr. Robert McKenna, Jr.. Dr. McKenna participates in the NETT at Cedars Sinai Medical Center in Los Angeles. The other NETT center in California is The University of California San Diego (UCSD) where Catherine Ramirez is the NETT Coordinator. This talk was an update on the progress of NETT.
To review, when LVR surgery swept the nation as a new treatment for emphysema, some alarming statistics began surfacing. While Dr. Joel Cooper (who led the movement), and some other surgeons, reported mortality rates of only 3-5%, the overall national mortality rate for LVRS was much higher. According to HCFA Medicare data, mortality was 26% within 12 months of surgery. Medicare called a halt to reimbursement and started a national multicenter study to evaluate LVR in emphysema patients. The NETT was initiated in 17 centers around the country.
- As of July 1999, 1710 emphysema patients have enrolled nationally in the screening phase of NETT to determine eligibility for surgery. It is hoped that a total of 2,500 patients will be randomized during the five-year period of the study, which ends in the year 2002.
- Of all the people screened, 1045 were either ineligible for pulmonary rehab or became ineligible during rehab.
- 702 patients have been found eligible for pulmonary rehabilitation. Even if they don't get into the randomization phase these folks are winners and already ahead of the game!
- 452 have completed rehab, and have been randomized to either maximum medical management or LVRS.
- 229 have been randomized to medical management while another 223 have been randomized to LVRS.
- After surgery there is a five-year follow-up with the patient being seen every six months the first year and once a year after that.
Cathy went on to tell us a little about the NETT team at UCSD and we particularly like the description of our friend Dawn Sassi, BSN, RN. "….a nurse who has been with the Pulmonary Rehabilitation team for more than ten years. She is an exercise enthusiast and attempts to impart some of that enthusiasm to her patients. Dawn says, "Commitment to an exercise program is critically important to maintaining and improving one's health and sense of well-being. Our goal in rehab is to help you have fun doing it!" And we promise that she'll do that. Dawn is our kind of gal!
One of the questions answered for Medicare by this study will be who is the ideal patient for this procedure, something not yet known. Other things being tracked are the use of pharmacy supplies, use of home care, the number of hospitalizations and general health care utilization after LVRS, compared to pulmonary rehabilitation alone.
What about questions you might have? Here are some…..
QUESTIONS:
Q. I am in an HMO that doesn't even pay for pulmonary rehab. Am I eligible for the NETT?
A. YES! It is important to note that all Medicare patients are eligible for NETT, even those in managed care plans. Medicare pays directly for NETT activities, including pulmonary rehabilitation. At UCSD, and at some other centers, co-payment is waived.
Q. If , after the pulmonary rehabilitation phase, I feel so much better that I decide not to have LVR may I back out?
A. YES! We promise that no one will drag you to the operating room! As with any research project, you are able to withdraw at any time.
Q. Does this mean that I can't have LVRS at a later time, if I change my mind again?
A. NO. You can again re-enter the study later.
Q. How do I find out if I am a candidate for the screening that will make me eligible for the pulmonary rehabilitation phase of the trial?
A. Check with your physician.
Q. My doctor doesn't seem very informed about the requirements, or doesn't seem able to answer all of my questions. Do I have any other options?
A. YES! Call 1/888-322-9064 for more specific information on requirements and the NETT centers and satellite centers closest to you.
Thanks for an interesting update, Cathy. For further information about UCSD, or questions you have for Cathy, call her at 1/619-543-2000.