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Unraveling that Living Donor Death Rate

The other day I was reading “living kidney donors: current state of affairs” by Connie Davis in the Advances in Chronic Kidney Disease, Vol 16, No 4 (July), 2009: pp 242-249. Near the very beginning of her article she states: Death after living donation is quite rare, with the risk of death reported as 0.02% to 0.04%
within 90 days of donation

She cites three references for this statment, so I investigate further.

 

1. United Network for Organ Sharing, Richmond.VA data as of December 31, 2007. Available at: http://optn.transplant.hrsa.gov/policiesandbylaws2/policies/
pdfs/policy_23.pdf. Accessed, May 11, 2009

The first is nothing but a link to OPTN’s ‘reporting policy’ establishing that ‘death’ is defined as occurring within 90 days of surgery. Not sure why she included this as a reference, but okay…

(yes, I’m out of chronological order, but there’s a reason…)

 

3. Matas AJ, Bartlett ST, Leichtman AB, et al: Morbidity and mortality after living kidney donation: 1999-2001 survey of United States transplant centers. Am J
Transplant 3:830-834, 2003

I have a copy of this study, so I pulled it up. Data for two years only, retrieved from survey of transplant centers were only 71% responded.

– two years out of fifty years worth of data?
– missing 29% of transplant centers?
– the data given is self-reported and not cooroborated, so in essence, it could be completely bogus and no one would know the difference.

Not quite reliable.

 

2. Wainright J, Cooper M, Bolton L, et al: Short-term complications of living donation. Am J Transplant 8:282, 2008

Despite a lot of time and effort, I couldn’t locate this article. Volume 8 is all issues from 2008, and 282 refers to the page number, which should put it in February’s issue. It wasn’t.

Confused, I asked a friend about it, hoping she could point me in the right direction. She sent an email to Davis, who responded that the reference was an abstract of a presentation as published in a supplement to actual journal.

After being pointed in the right direction, I was able to locate the source material, which was listed as such in the supplement:

Abstract# 388
Short-Term Complications in Recent Living Kidney Donors. Jennifer L. Wainright,1 Connie L. Davis.2 1Department of Research, United Network for Organ Sharing (UNOS), Richmond, VA; 2Department of Medicine, University of Washington, Seattle, WA.

The small abstract itself said: The cohort included all living kidney donors reported to the OPTN in 2005-2006 (n=13,000). Rates of complications reported on the Living Donor Registration (LDR) form were calculated.

 

Where to begin…..

1. She documented the reference incorrectly. I’ve seen presentations used in academic articles as references and they are always listed as presentations and not obscured as a published article.

2. Her original reference (please review) hides the fact that SHE is the main author of the presentation. Davis is, in effect, referencing herself. Hardly up to academic scientific standards.

3. The presentation contained data of one year ‘as reported to UNOS’. While UNOS has required follow-up data submission from transplant centers since 2000, they have never held the centers responsible for noncompliance, and more tellingly, numerous statements and studies have indicated that transplant centers are consciously NOT following their living donors nor reporting data to UNOS(107).

By 6 months, complications data are 17% incomplete; by 12 months, data are more than 50% incomplete. About one-third of kidney donors were reported as lost to follow-up during the first year post-transplant. (61)**

By 6 months, complications data were less than 10% incomplete; by 12 months, data were less than 20% incomplete. A small fraction of liver donors were reported as lost to follow-up during the first year post-transplant.(61)

Out of 167 donors from 1983-1995 at one transplant center, 23 were unlocatable.(4)

Mr. Graham, Executive Director of UNOS, commented that the living donor data collected to date (2008) does not answer all of the questions on long-term complications, pre-donation issues, peri-operative conditions, and financial complications. (61)

Of the 6732 living donors who donated an organ in 2006, more than 30% were lost to follow-up. There is significant variation among centers in terms of the percentage of donors for whom follow-up data is missing with some centers declaring no available follow-up for 100% of their donors (107).

 

It’d be easy to dismiss Davis’ incorrect referencing except that she has extensive experience writing and publishing academic articles, so she knows better. Changing the authors from what appeared in the supplement certainly doesn’t help her case. Worse, she consciously picked two data sets with severe limitations and presented them as having absolute conclusions about living donor mortality, which they clearly don’t.

I’m very concerned that no one on the editorial board of the journal noticed, or if they did, failed to require a correction. These articles are what educate the medical community and enable them to make treatment and policy decisions for the public. Obfuscating the truth is a severe ethical shortcoming and one that shouldn’t be tolerated, especially from someone of Davis’ stature. Unfortunately, no one else seems to be concerned.

 

**numbers refer to the ‘references’ page on the LD101 website.

 

Davis CL (2009). Living kidney donors: current state of affairs. Advances in chronic kidney disease, 16 (4), 242-9 PMID: 19576554

Permanent link to this article: http://livingdonorsarepeopletoo.com/unraveling-that-living-donor-death-rate/

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