I recently observed two separate instances of people insisting that most living kidney donors were donating to “people they didn’t know” or “weren’t related to”. This is so far from the truth that I wondered where these folks had gotten their information. Rather than risk a she-said-he-said scenario, I turned back to the source documents.
Cuz I’m a source document kind of woman where these things are concerned.
First I went to Davis’ & Cooper’s “State of the U.S. Living Kidney Donor“, published in 2010, which compared living kidney donation in 1988 and 2008. Their pie charts were eye-catching enough, I suppose, but they failed to provide specific numbers, forcing the viewer/reader to make estimates. Which I’m not particularly fond of.
But worse was the categorization of living kidney donors’ relationship to their recipients:
Biological parent, child, sibling, other relative – okay.
Spouse/partner – relevant.
Not reported (not sure how this possible considering it’s a required field on the official Living Donor Registration Form, but I’ll get to that in a minute).
But then there’s “Other Unrelated Directed Donation”.
Since “related” in transplant terms means biological, any relationship that isn’t a spouse/partner is considered “Other Unrelated Directed Donation”? That seems problematic.
I then tapped into SRTR’s annual report, thinking they *must* have more comprehensive and detailed demographics.
A line chart this time, from 1998 to 2011. One line for ALL related LKDs. Another for ‘distantly related’ (??), a third for Spouse/Partner, a fourth for Paired Donation*, a fifth for Other, and a sixth for the Unrelated Directed.
And again, with no actual numbers, just approximations on the graph. *sigh*
So we have a category that composes approximately 20% of LKDs which could mean any of the following:
– best friend
– dude on the street holding a sign
– cousin’s spouse
– billboard solicitation
– book club member
– social media solicitation
– dog groomer
– postal carrier, etc.
Lumping all those scenarios into the same category seems a bit broad, not to mention inaccurate for data collection and analysis purposes.
I dug up the Living Donor Registration Form (LDR) which is required by transplant centers for every living donor. The categories can be found at the top of page 2 under “donor type”. The last option says “Non-Biological, Other Unrelated Directed Donation”.
And more importantly: Specify.
In some small way, it’s good to know the LDR form isn’t as crappy as the resultant, publicly released data. I’d like to think the transplant centers follow directions and actually fill in that little field (or that OPTN implements enough quality control to make them), but I’ve seen enough data sets over the years to know that’s highly unlikely. It’s also possible that the answers to that field are so varied that it’s ‘easier’ to lump them all together for graphics purposes. And it’s possible that OPTN and the transplant centers don’t want to examine the composition of that category too closely (especially in regards to ‘solicited’ donors). There are probably other options I haven’t considered as well.
The folks who have the perception that LKDs are donating to strangers/people-they-don’t-know are getting the idea from somewhere. Is it the plethora of media stories about swaps, pairs, chains and solicitations? Is it the transplant centers’ websites, or their sponsored workshops? Are the small number of over-enthusiastic unrelated LKDs dominating the conversation?
My concern about this data is as it always has been – accuracy. Transplants, because they are supported by public money and public body parts, are a matter of public health and public policy (Could I use the word “public” more times in one sentence?). Therefore, the public (there’s that word again) deserves full and uncensored information, not what’s most expedient or convenient. Unfortunately, most of the citizenry don’t know that’s not what they’re getting. Which is a problem all its own.
*On one hand, i understand why Paired Donation or Chains are their own separate category, but the if the goal is to assess the composition of living kidney donors, this defeats the purpose. Say a person wants to donate to their sister, but s/he isn’t a match. Meanwhile, someone else wants to donate their cousin but they also aren’t a match. In a pair/swap situation, those two LKDs are technically donating to a *stranger*, an “unrelated directed” donation, but their intention is to get a kidney for their sister/cousin. Considering them “unrelated donations” skews the data and misleads the public as to who living kidney donors really are.