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Living Donor Research Living Donor Risks Living Kidney Donor Psychosocial Risks

1 in 10 Living Kidney Donors Report Negative Outcome

The RELIVE study is a poor substitute for comprehensive, mandatory living donor follow-up, but in the US where the healthcare system is capitalistic and money buys political influence, RELIVE is all we’ve got.

So, with a 36% response rate (dismal), the researchers found that 1 in 10 (10%) of living kidney donors report at least one negative outcome of donating, including: “fair or poor overall donor experience, financial burden, regret or discomfort with decision to donate, or psychological difficulties since donation”

“Rating the overall donor experience more negatively was associated with donor complications, psychological difficulties, recipient graft failure, and longer time since donation.”

I find that last bit most interesting.

  • Are the folks who’ve donated more recently still on the “high” from donating?
  • Are those same folks not ready to admit their experience wasn’t awesome? (Since the public perception is that LDs skip merrily off into the sunset, it can be difficult for LDs to admit anything to the contrary)
  • As folks get further away from their donation, are they experiencing more health and psychosocial issues?
  • We know transplants aren’t cures, so is it possible that the LDs further away from donating are more likely to have seen their recipients’ health decline or even die?

 

I have no conclusions, and neither does RELIVE, but the fact that LKD’s assessment of their living donor experience decline over time could be significant. It’s unfortunate we don’t have any long-term follow-up to know for sure.

 

 

Jacobs, C., Gross, C., Messersmith, E., Hong, B., Gillespie, B., Hill-Callahan, P., Taler, S., Jowsey, S., Beebe, T., Matas, A., Odim, J., Ibrahim, H., & , . (2015). Emotional and Financial Experiences of Kidney Donors over the Past 50 Years: The RELIVE Study Clinical Journal of the American Society of Nephrology, 10 (12), 2221-2231 DOI: 10.2215/CJN.07120714

Categories
Ethical Considerations Living Donor Research Living Kidney Donor Psychosocial Risks

Potential Kidney Donors Are Ambivalent

According to this Irish transplant center. 15.5% of potential LKDs voluntarily writhdrew from the evaluation process. However, the number is actually higher than they’re reporting. Apparently, In Ireland, if multiple potential LKDs come forward for a recipient and they are all acceptable blood and HLA matches, only *one* is permitted to continue with the evaluation (How they make the determination of which potential LKD proceeds is unclear). So, the authors are including *all* the potential LKDs who were adequate blood/tissue matches.

Their calculation is 95/614 (15.5%), whereas 261 of those 614 didn’t progress past the immunological test because of multiple potential LDs.

When those are removed, the statistic beomes 95/353, which is 26.9%.

 

Someone asked me why it was significant that over 1 in 4 potential living kidney donors deemed “acceptable” matches for a would-be recipient did not continue the evaluation progress.

First: coercion. It’s been well-established that potential living donors experience “pressure” to donate, and the closer (biologically/emotionally) one is to the prospective recipient, the greater that pressure, Ireland, unlike the US, is not as keen on random members of the living public donating their organs to strangers. Therefore, the potential LKDs in this study were emotionally and/or biologically related to their would-be recipient. That nearly 27% of them still decided not to be evaluated speaks volumes to the ambivalence present in many donor candidates.

This above fact is crucial because the public perception of living donation (which is carefully crafted by the transplant industry, specially selected living donors, and complicit media types) is that living donation is positively “life changing”* for the kidney donor. The knowledge that more than 1 out of 4 people who “match” their intended recipient choose not to donate can be comforting to other people who are suffocating under the pressure to continue with the process.

Living donation should be a *choice*, a fully informed and un-coerced choice, free from the pro-recipient foundation of the transplant system. Information like this helps to make that happen, and that’s invaluable.

 

*A rabbi is contacting living donors through social media to gather their quotes/words on how donating was “life-changing” for them. I’d like to link to the source material, but it was shared in a “closed” FB group and I have to respect the group’s rules.

Categories
Liver Donor Living Donor Research Psychosocial Risks

Psychiatric Complications in Living Liver Donors

The authors studied 142 donors who underwent live-donor liver transplantation at Nagoya University Hospital between April 2004 and July 2014. None of the living donors had pre-existing psychological complaints prior to donation.

 

4.2% developed psychiatric complaints after donation, including major depressive disorder, panic disorder, conversion disorder, and substance use disorder.

(my emphasis)

“all donors received anti-anxiety drugs, half took anti-depressants, and supportive psychiatric therapy was concomitantly provided to all subjects. The average treatment period was 53.3 months. Regarding subject outcomes, 50% donors achieved remission, and the other half continued treatment.”

 

The average treatment period was 4.5 years. Think of that whenever someone says that liver donation has no long-term consequences.

 
Kimura, H., Onishi, Y., Sunada, S., Kishi, S., Suzuki, N., Tsuboi, C., Yamaguchi, N., Imai, H., Kamei, H., Fujisiro, H., Okada, T., Ishigami, M., Ogura, Y., Kiuchi, T., & Ozaki, N. (2015). Postoperative Psychiatric Complications in Living Liver Donors Transplantation Proceedings, 47 (6), 1860-1865 DOI: 10.1016/j.transproceed.2015.06.021

Categories
Living Donor Protections Living Donor Research Living Kidney Donor Psychosocial Risks

Resilience and Quality of Life in Living Kidney Donors

Resilience, according to various sources on the net, is described as an ability to recover quickly from misfortune, change or difficulty; moderating the negative effects of stress, and promoting adaptation.

 

In this study, 161 potential living kidney donors took the RS-13 (Short version of the Resilience Scale), which “measures the competence to moderate the negative effects of stress, and acceptance of life and self”. The prospective kidney donors had higher resilience scores than the norm. The 12 excluded potential living donors had resilience scores comparable to the norm.

 

For quality of life, the researchers “used the German version of WHOQOL-Bref, which includes four domains such as physical health, psychological health, social relationships and environmental conditions.”

“In all domains of quality of life, eligible donors had significantly higher values than the normative sample”

 

(emphasis mine)

Three months after donation health-related quality of life was significantly impaired in all domains compared to pre-donation values

“Out of the whole group of potential kidney donors (n=?161) 111 have undergone a nephrectomy. 41 (46.7 %) donors responded to follow-up questionnaires by mail*. Three months after donation, all domains of health related quality of life were correlated significantly with pre-donation resilience score”

“Our results indicate donors may have higher distress levels in the early period after nephrectomy. Psychosocial support may be most necessary at this point in time.”

 

One more note (emphasis mine):

“The authors reported emotional summary score for quality of life was lower in female donors, caused by a reduced role functioning. The world-wide higher incidence of depressive disorders in women may explain the differences. Women may be burdened by multiple familial role requirements in the context of donation, e.g. as donors and simultaneously as care giving marital partners. Nevertheless this finding requires further investigation and women should be regarded as a risk group.”

This echoes another recent study, which found that female living donors experienced greater fatigue, role function reduction and depression post-donation.

 

*Gotta wonder about that other half.
Erim, Y., Kahraman, Y., Vitinius, F., Beckmann, M., Kröncke, S., & Witzke, O. (2015). Resilience and quality of life in 161 living kidney donors before nephrectomy and in the aftermath of donation: a naturalistic single center study BMC Nephrology, 16 (1) DOI: 10.1186/s12882-015-0160-z

Categories
Advocacy Informed Consent Living Donor Research Living Donor Risks Living Kidney Donor OPTN Psychosocial Risks

Living As My Sister’s Keeper

The Establishment published this essay a couple of weeks ago, entitled Of Kin and Kidney Transplants: Living As My Sister’s Keeper. It juxtaposes the Herrick transplant with a personal narrative, interspersed with research about risks. (It’s much more impactful and entertaining than it sounds, I promise). Please read and share with everyone who needs to see it. If we want the conversation about living donor well-being to gain momentum, we make sure these stories are distributed as widely as possible.