Before digging in to the results of the survey, it’s important to understand that all surveys can be biased and data is not always as precise as we’d like it to be. This particular survey represents a subset of all living kidney donors and their interpretations of the questions I asked. As hard as a I try not to let it, my personal experience and opinions as a living donor will be reflected through the lens I choose to present the results.
Where it’s available (and if I have been able to find it…) I will note how that compares to broader statistics about living kidney donation. While discussion the data with other donors in the Facebook group, I learned of other more official studies that are underway or have captured more robust samples of similar data. The Organ Procurement and Transplantation Network site includes a lot of demographic information about living donors.
As a quick snapshot, here’s how respondents of this survey answered a few key questions about their experience and how they may influence responses throughout the survey.
How Did You Hear About This Survey?
The majority of the living kidney donors who completed the survey heard about it through online and offline living kidney donor support groups. The results will be skewed a bit and can actually tell us a little about the biases that might be present in those groups.
How Long Ago Did You Donate Your Kidney?
The largest segment of survey respondents donated fewer than two years ago. I think tells us a little more about the donors who are most active in the social media groups. Intuitively, it makes sense that those who donated more recently would feel most connected to their donation, more likely to be seeking advice from other donors, and more willing to participate in an online survey.
What Is Your Gender?
The survey participation skews female — 83% of the living kidney donors who completed the survey were female whereas OPTN data suggests the females make up closer to 60% of all living kidney donors. Given that so many of the respondents came through a Facebook group, this makes sense. According to Sprout Social, Facebook demographics continue to skew heavily toward women with 83% of adult women using the network, compared to 75% of men.
How Old Were You When You Donated a Kidney?
The average age at time of donation for survey respondents was 44 with the largest segment (47%) falling within the 35-49 range. It’s interesting to look at how that compares to OPTN data.
At first I was surprised to see that the survey respondents skew older than the larger data set because so many came in through Facebook. But when I think about it, it makes sense. Not just because Facebook usage amongst older demographics is growing, but because the survey results skew towards recent donors. OPTN data shows the older age groups trending up over time.
Were You Treated for Complications After Your Kidney Donation?
11% of survey respondents say they were treated for surgical complications during their initial hospital stay after their kidney donation. My first thought that was way higher than I expected based on the research I did before I became a donor. It makes sense to me, though, that donors who had a less than perfect experience may be more likely to seek support and to share their stories in donor support groups.
As a prospective donor, take that 11% with a grain of salt. While it is a good reminder that all major surgeries come with risks, it doesn’t capture the specifics of the complication or the long term impact on the donor’s health. I plan to dedicate a separate post to dig in to donor complications and long term health. (coming soon)
I don’t know where to pull official numbers on donor complications, but if you do please let me know so I can add that as frame of reference.
When You First Came Forward As a Donor, Who Were You Hoping To Benefit?
16% of the living kidney donors who took this survey said they came forward as a donor with no one particular in mind. While my segments do not align exactly with the segments reported on the OPTN site, it looks like fewer than 2% of living kidney donors are anonymous, altruistic donors.
This was one of the most fascinating data points for me and I spent a lot of time thinking about it. It makes sense to me that someone who came forward to benefit a stranger or no one in particular might feel more connected to the larger cause and would be over represented in donor support groups and advocacy work compared to someone who came to organ donation to benefit a loved one.
In fact, when asked how they honor their relationship to organ donation, the survey data shows that those who donated anonymously or to a stranger are statistically more likely (p=.05) to participate in online support groups and/or to share their story with media outlets than those who donated to benefit a known recipient.
Some may find it encouraging to see how that relationship between donor and recipient has changed over time. Note that I believe the OPTN numbers reflect the actual recipient whereas the survey question was attempting to get at the intended recipient (e.g. who you were hoping to help rather than who actually got your kidney) so it’s not a perfect comparison.