Cristy on OPTN data: Living Kidney Donors Listed for Transplant, part I

[Clark]

http://sirencristy.blogspot.com/2011/07/living-kidney-donors-listed-for.html

Living Kidney Donors Listed for Transplant, part I
Four months ago I requested data from UNOS on LKDs who had been waitlisted in need of their own kidney transplant. Even though the first living kidney donor transplant was in 1954 and UNOS was up and running in 1988, no identifying info was collected on living donors until 1994 making tracking impossible prior to that date. A local four-point waitlist priority was given a bit later, which made pinpointing prior living donors on the waitlist easier.

In my vast files of articles, I have earlier data on waitlisted LDs, but nothing as comprehensive as what I requested and received. I thought some comparison might be in order:

Total number of wait list registrations of known living kidney donors

115 - January 1995-June 2005
121 - January 1996-May 2006
169 - January 1996-December 2007*
285 - April 1, 1994-March 31, 2011

Both the 96-07 and 94-11 charted the years of first listing. When I compared the same years line by line, 94-11's numbers for many years were higher than 96-07. I have no idea why this may be, but I did want to point it out.

Also, 96-07 includes 9 additional LKDs from 1987-1993. Since my data has nothing prior to April 1994, the most accumulative total as recently as March 31, 2011 is most likely 294.

Age at time of donation is unknown for 167 of the 285 (122/169 also unknown), which is most likely the result of having no social security numbers prior to 1994.

Of 285 total, 118 known age at time of donation:
74 were 18-34 (63%)
38 were 35-49 (32%)

Compare that to national data on all living kidney donors from 1988 forward, according to OPTN's website:

49 were 11-17 yo (.046%)***
36,877 were 18-34 (34.4%)
48,294 were 35-49 (45%)
20,724 were 50-64 (19.3%)
1242 were 65+ (1.2%)
total: 107,188 (including 9 unknown)

So, and this requires a bit of inference, unfortunately; only 34% of total living kidney donors are 18-34 at time of donation, but 63% of LKDs waitlisted were that age when they donated?

Not good springs to mind.

***btw, the b.s. 'guidelines' OPTN passed in '07 cautioned very strongly against using LDs under the age of 18 yet 5 of the 11-17 year olds came in 2008 and 2009. Way to be ethical and put the living donor's health first transplant programs!

[donor99]

What was the time frame from donation to listing? Ethnic mix? BMI?

[livingdonor101]

Rather than repeat myself, you can refer to my blog for additional posts on the info I received from the OPTN database, as well as how it compares to some of the published studies on the same issues of LKD end-stage renal disease and wait-listing. (

Unfortunately, OPTN's data is far from comprehensive or complete. They had no identifying info (aka SSN) prior to 1994*, and still have no quality controls on the data they now collect. It's only because of local four-point waitlist priority** that they can easily see who's been waitlisted***. Add to that the transplant centers' lack of providing important detials on the LKD when listing them, and UNOS' lack of picking up the phone to confirm or compile needed info, and what you have is a mess of a database and dataset.



*although they do have some LKDs that were wait listed as early as 1987
**and the Medicare benefit for end-stage renal disease
**there is always the possibility that some LKDs weren't aware of this priority and were listed without it, and consequently went undetected.