Hi,
The wait at several lung tx centers is very short right now
Ochsner, Duke, Cleveland, Mayo- Jacksonville - are the shortest waits.
But.... The New Lung Allocation Rules are going to take effect in April of 2005. The new allocation will mean that the sickest go first. The wait for lungs will no longer be based on "time on the list", but rather, expected survial with present lungs and expected benefit of lung tx.
Here is a general outline of how it works.
Children under 12 are on their own list.
The point score reflects a weighted balance of
1. how long a patient is likely to survive on the transplant list
with
2. how long the patient should benefit from receiving a transplant
3. it also accounts for the orginal lung diagnosis.
The Lung Allocation Score Values is calculated for each patient from the following diagnosis information:
1. functional status
2. 6 minute walk distance
3.ventilator use
4. pulmonary capillary wede pressure
5. creatine
6. diagnosis
7. forced vital capacity
8. PA systolic
9. O2 at rest
10. age
11. body mass index
12. insulin dependent diabetes
Here is some information that I just got from Medscape about the new Lung Allocation which will go into effect in April 2005.
Medscape coverage of: International Society for Heart and Lung
Transplantation 24th Annual Meeting and Scientific Sessions |
Will There Be a New Lung Allocation Scheme?
When a patient is listed for lung transplantation, regardless of the
severity of his or her disease, the new candidate is placed in the queue
behind previously listed candidates. Priority is given to those who have
been on the list the longest. Only the candidates with IPF receive 90
days waiting time upon listing. Recently, a proposal has been made by the
United Network for Organ Sharing (UNOS) for altering the lung
transplantation allocation scheme, which was presented by Tom Egan,
MD,[14] of Chapel Hill, North Carolina; advantages of the proposed change
and how it would determine priority for donor lung offers was explained.
Dr. Egan described the proposed allocation model, which is based on
clinical data from patients listed for first transplant and from
candidates who received a lung transplant between January 1, 1999 and
December 31, 2001. Pediatric patients under age 12 were not included.
Transplant candidates were categorized into 4 major groups based on
diagnosis; all groups included patients age 12 years and older:Group A: patients with emphysema, bronchiectasis,
lymphangioleiomyomatosis, and sarcoidosis with a mean pulmonary artery
pressure (PAP) </= 30 mm HgGroup B: patients with pulmonary vascular diseasesGroup C: patients with cystic fibrosis and immunodeficiency disordersGroup D: patients with restrictive lung disease such as IPF, pulmonary
fibrosis (other causes), sarcoidosis with mean PAP >/= 30 mm Hg, and
nontransplant-related OB.
Factors that predicted death in waitlisted candidates included FVC,
ventilator use, age, body mass index, insulin-dependent diabetes,
6-minute walk distance, New York Heart Association (NYHA) classification,
and disease diagnosis. Other important risk factors in certain diagnosis
groups were the requirement for oxygen at rest and systolic PAP.
Ventilator use, age, serum creatinine, NYHA classification, and diagnosis
predicted survival after transplantation. FVC and pulmonary artery
occlusion pressure were important risk factors in certain groups.
The Lung Allocation ScoreThe new system is based on a lung allocation
score. The method of deriving this score is as follows. First, data on
the clinical variables listed above are collected for each candidate.
Estimated number of days alive over the next year on the waiting list
without a transplant (called the waitlist urgency measure [WUM]) is then
calculated from Cox models of the clinical variables. The WUM range is
0-365 days. Next, estimated number of days alive in the first year after
transplantation (called the posttransplant survival measure [PTSM]) is
calculated from Cox models of the clinical variables. The PTSM range is
0-365 days. Finally, a candidate's transplant benefit measure (TBM) is
calculated as the difference between the PTSM and the WUM (PTSM-WUM). The
TBM range is -365 days to +365 days.
Next, from the proposed computations as described above, a raw allocation
score is determined. The raw allocation score is calculated as the
difference between the TBM and the WUM (TBM-WUM). The raw allocation
score range is -730 days to +365 days. Finally, the raw allocation score
is normalized to a 0 to 100 scale and termed the lung allocation score.
The higher the candidate's lung allocation score, the higher the priority
on the waiting list. The mathematical formulas for calculating these
scores are as follows:
Raw allocation score = TBM-WUM; TBM = PTSM-WUM. Therefore, raw allocation
score = PTSM-WUM-WUM, then = PTSM – 2(WUM)Lung allocation score = [(Raw allocation score + 730)/1095] x 100
The proposal is that each lung transplant candidate will have a lung
allocation score calculated and updated as deemed necessary by the
transplant physician. The lung allocation score should facilitate a more
efficient and equitable distribution of donor lungs to transplant
candidates and achieve the goal of reducing mortality on the lung
transplant waiting list while simultaneously improving the transplant
benefit for those who undergo lung transplantation.
Not Everyone AgreesDr. Robert Frantz, MD,[15] of Rochester, Minnesota,
argued that the proposed changes for the lung transplantation allocation
scheme are fundamentally flawed. First he contended, not only are the
data that will be used to derive the lung allocation score more than 2
years old, but much of the data collected is at the time of listing for
transplantation, which could add another 2 years by the time the
transplant occurs. Also, patients have been removed from the transplant
waiting list when they were deemed to be too sick for lung
transplantation; as a result, the risk of death without transplantation
has been underestimated. Other flaws of the proposal include the
variables used, such as the actual distance walked in 6 minutes, and the
absence of other important prognostic factors to make the above
calculations, such as use of intravenous (IV) antibiotics, presence or
absence of Burkholderia species, or level of arterial carbon dioxide
tension. Nonetheless, Dr. Frantz concluded that it is time for a change
and that the latest UNOS lung allocation proposal is an important step in
this direction.
Cystic Fibrosis and Pulmonary HypertensionCystic fibrosis and pulmonary
hypertension diagnostic groups have more refined criteria for predicting
outcomes without lung transplantation. A recently published study by Liou
and colleagues[16] on maximizing survival benefit of lung transplantation
in patients with cystic fibrosis is based on data sources from the UNOS
database and the Cystic Fibrosis Foundation patient registry.
Implementing Liou's recommendations may shorten the waiting list by
eliminating patients deemed too healthy for transplantation whose
survival rates without transplantation are superior to survival rates
with transplantation. Liou also pointed out that patients infected with
Burkholderia cenocepacia have a predictably worse transplant outcome than
patients not infected with this organism.[16]
Patients with primary pulmonary hypertension, once considered by the late
Eugene Robin, MD, of Stanford as "denizens of the kingdom of the near
dead," have realized significant improvements in their functional
performance and quality of life over the last decade as a result of IV
prostacyclin and the development of endothelin-1 antagonists. These
developments have altered the appropriate time to list this particular
group of patients, which certainly has changed in the last 5 years. An
argument can be made that the 6-minute walk distance of 300 meters as
described by Sitbon and colleagues[17] might be the best discriminator of
outcome in this population. In addition, brain natriuretic peptide level
may need to be incorporated in a prognostic equation to best identify who
would derive the greatest transplant benefit.
Conclusion
I agree with some elements of the new proposal with the caveats mentioned
above; however, it should be noted that expected days of life on the
transplant waiting list and after transplantation may simply be days not
dead, which begs the question, Should there be some measure of functional
survival? Also, it is important to know whether all patients listed for
each of the diagnostic groups (A-D) are listed in accordance with the
international consensus guidelines published by ISHLT working group.[18]
The Liou article suggests that some candidates may have been too healthy
for listing or that our original criteria for listing are flawed.[16] I
suspect a little of both. Also, as suggested by Dr Frantz, we should
strongly consider evaluating outcomes well beyond 1 year after
transplantation, perhaps out to 5 years or beyond.
To derive the optimal lung transplant benefit from such a scarce
resource, it continues to boil down to what the late James Theodore, MD,
from Stanford taught us, "the time to list a patient for lung
transplantation is when they are sick enough to need it, well enough to
survive it, and psychosocially capable enough to endure it." As we
continue to refine our experiences and change what we believe is best for
all lung transplant candidates, we will need to be cautious about
blurring the boundaries between nonbeneficial overtreatment and
discriminatory undertreatment.
Joanne M. Schum
Cystic Fibrosis
Bi-lateral Lung Transplant Recipient
September 12, 1997
University of North Carolina Hospitals Chapel Hill
Residence: Upstate New York
email: luckylungsforjo@aol.com
Manager of: Transplant Support - Lung, Heart/Lung, Heart
http://groups.msn.com/TransplantSupportLungHeartLungHeart
"Taking Flight - Inspirational Stories of Lung Transplantation"
Compiled by Joanne Schum
Authored by lung recipients around the world
http://www.trafford.com/robots/02-0497.html
http://www.trafford.com/
The Holidays are here. Want to start your shopping early? Why not shop
for great gifts and help those with cystic fibrosis! Check out our CF
Shop and shop until your hearts content...
http://www.lungsforlife.org/other_ways/lfl_store.htm
Lungs for Life Foundation
http://www.lungsforlife.org
Joanne's Bracelet, Transplant Awareness Bracelet, CF Awareness Bracelet
http://www.lungsforlife.org/other_ways/lfl_store.htm
