Categories
Follow-Up Liver Donor Living Donor Protections Living Donor Research Living Kidney Donor Psychosocial Risks

Living Donor Psychosocial Evaluations Are Inadequate

Seven European researchers, on behalf of the ELPAT Paychological Care for Living Donors and Recipients Working Group “performed a systematic literature review of guidelines, consensus statements, and protocols on the content and process of psychosocial screening of living kidney and liver donor candidatesThirty-four publications were identified, including seven guidelines, six consensus statements, and 21 protocols or programs.”

“Across 34 publications, 197 different psychosocial factors were identified that can be clustered into 42 psychosocial domains”. According to the researchers, this “broad spectrum” suggests that the transplant industry has no clear definition of what factors need to be identified and/or addressed.There was also a lot of discrepancy in terminology (e.g., psychological well-being, psychosocial stability, psychopathology) “and in the level of detail provided in defining each criterion: some authors only addressed broad “umbrella” terms, like psychiatric disorders, whereas others specified these (e.g., mood disorders (depression, anxiety), personality disorder (schizophrenia, borderline)). Moreover, some authors just listed factors without any clarification, whereas others provided detailed descriptions, together with examples from clinical practice. For example, Leo et al. explained why employment status is important, as employers are a principal source of economic support by providing sick leave or vacation time during postsurgical recovery.”

Here are some of the factors covered, from most common to least (From Table 4 in the paper):

  • Motivation-related factors: 73.5%
  • Coercion or Pressure to donate: 67.6%
  • Support before and after donation; 64.7%
  • Donor-recipient relationship: 58.8%
  • Current of Past psychiatric disorders: 50%
  • Competence: 47.1%
  • Financial Issues: 47.1%
  • Coping-related issues: 44.1%
  • Employment-related issues: 44.1%
  • Family-related issues: 41.2%
  • Ambivalence: 38.2%
  • Unrealistic Expectations: 32.4%
  • Cognitive Status: 29.4%
  • Health Behavior (eg. obesity, smoking, exercise): 23.5%
  • Potential Medical Risks and urgency of donation:: 8.8%
  • Health concerns during and after donation: 5.9%

“Most factors were not supported by evidence or were at least not referenced, making it unclear if they indeed predict poor outcomes in donor candidates.”

In layperson’s terms, this means no proof exists that any of the factors the evaluation examines (eg. drug abuse, history of depression] is linked to poor living donor outcomes. What this really means is that the transplant industry hasn’t taken the time to study living donors and quantify exactly how they fare post-donation and which attributes contribute to their well-being.

“Contraindications for donation [aka red flags, or reasons folks shouldn’t donate] were specifically stipulated in 18 papers (52.9%),of which only three indicated whether these were absolute or relative contraindications [‘relative’ meaning: well, maybe they shouldn’t donate, whereas ‘absolute’ means: no, absolutely not], and only one paper indicated that these were evidence-based”

 

Their final conclusion:

“At present, there is no consensus, nor strong evidence or concrete guidance on what to screen for, how to handle identified psychosocial problems, and how to perform the screening, leading to huge variability in screening practices,the risk that important psychosocial factors might be overlooked or that unnecessarily time-consuming and costly procedures are being undertaken.”

Read the whole thing at the link

 

Duerinckx, N., Timmerman, L., Van Gogh, J., van Busschbach, J., Ismail, S., Massey, E., Dobbels, F., & , . (2014). Predonation psychosocial evaluation of living kidney and liver donor candidates: a systematic literature review Transplant International, 27 (1), 2-18 DOI: 10.1111/tri.12154

Categories
Ethical Considerations Informed Consent Living Donor Research Living Kidney Donor

Living Kidney Donor Consent Forms Don’t Make It Easy to Opt-Out

 

These researchers’ abstract pretty much says it all (emphasis mine):

Ethicists and guidelines have suggested that potential living kidney donors who withdraw from evaluation be offered an ‘alibi.’ We sought to determine what potential living kidney donors are told about their ability to opt out, alibi availability and postwithdrawal confidentiality.

We reviewed 148 consent forms for living kidney donor evaluation from US transplant centres that performed >5 living kidney transplants in 2010–2011 (response rate 87%).

We found that while 98% of centres used evaluation consent forms that indicated that the donor could withdraw, only 21% of these documents offered an alibi. Another 23% of centres’ consent forms indicated that the transplant team would be willing to inform the intended recipient that an individual was not a potential donor.

Relatively few consent documents explicitly addressed the confidentiality of the donor’s health information (31%), candidacy status (18%), decision (24%) or reasons (23%) following withdrawal.

To preserve potential donors’ autonomy and relationships, we advocate that all transplant centres offer general alibis in their evaluation consent forms. We conclude by offering recommendations for evaluation consent discussions of opting out, alibis and postwithdrawal confidentiality.

 

 

 

 

 

Thiessen C, Kim YA, Formica R, Bia M, & Kulkarni S (2014). Opting out: confidentiality and availability of an ‘alibi’ for potential living kidney donors in the USA. Journal of medical ethics PMID: 25368413

Categories
Living Kidney Donor Organ Markets

How Legal and Illegal Kidney Trafficking Hurts Everyone

I ran across this scholarly paper the other day, compliments of my google scholar alert. I encourage everyone to read it in its entirety. Below are some excerpts:

The World Health Organization estimates that there is a kidney sold every hour illegally.

 

After the introduction of cyclosporine (anti-rejection medication) in the mid-70s and global distribution in the 1980s: the kidney took on new meanings; in a living donor, the kidney was now envisaged as a surplus object, an object that could serve wider uses for others…

In this clinical landscape, “the medicalized body” abstracts a person from their parts and made the distancing of the material body from the ‘self’ quotidian.

 

These new understandings of the body, especially the rhetoric of surplus of one’s other kidney, were quickly normalized and mobilized within medical and patient communities. With transplantation, the living donor’s other kidney was no longer seen as useful to them, but rather of better use elsewhere — in the body of a critically ill patient.

 

Kalindi Vora argues that the expendability of populations and persons is directly linked to their labour use-value; those who fail to be significant economic actors in the dominant society are not as useful as those who are.
Kidney traffic hinges on division of both the body and of the space in which the body is fragmented. No longer
a ‘gift’, the commercialized kidney renders social relationships through exchange irrelevant. With the division of space which renders donors anonymous, there can be mindful distance of the recipient taking one’s kidney for their own use; this mindful distance is bolstered by the act of monetary compensation to the seller as well as keeps the broker relevant.

Anne Griffin recently detailed the dubious parameters in the criteria used to define the [Iranian] waiting list as ‘eliminated’ in Ghods’s study. Griffin described that poor patients, who largely have to wait for cadaveric donation, since they cannot afford to compensate LRD or LUD’s, were still waiting on kidney transplants; the wait was only over for those with fiscal means. 

(emphasis mine)

 

Especially in the wake of publications from medical and ethnographic studies of kidney vendors in India, Bangladesh, Iran, and Moldova, variations of the same story were told: selling a kidney never made any significant impact on donor’s economic lives, despite what many economists, bioethicists, and medical professionals claim. What vendors did experience were lost wages, from the post-operative pain and sickness many vendors felt, feelings of deep regret, and societal expulsion in some grave cases. Thus, to promote the dismemberment of the economic underclass as a means of being economically ‘visible’ is both ethically and morally irresponsible. Moreover, rarely mentioned in literature advocating legalized markets (regulated and unregulated) are the risks of nephrectomy to donors or strategies focused on prevention of renal disease.

 

As Donald Joralemon and Phil Cox aptly state, “if society has a moral duty to rescue, the obligation surely is not limited to rescuing those of means.”

(emphasis mine)

 

Categories
Ethical Considerations Living Donor Misinformation Living Donor Research Living Donor Risks Living Kidney Donor

If Every Transplant Center Says It, It Must Be True

Subtitle: Or it isn’t, but they say it anyway…

 

Recently, Google Alerts dropped the University of Wisconsin Medical Center’s “10 Reasons Why You Should Be a Living Kidney Donor” in my lap (or inbox). The exaggerations and misleading statements on the page are worthy of multiple blog posts, but right now I want to focus on the most egregious:

You can be assured, living donor outcomes are strong. Living donors go through the donation experience without experiencing any decrease in lifespan and they do not have a higher rate of kidney failure.

 

Here’s the problem: the U.S. has no valid comprehensive data on living donors. Since 2000, OPTN, the membership organization that manages the U.S. transplant system, has required transplant centers to report one year of follow-up on all their living donors. But nine years later, their Consensus Report of the Living Donor Data Task Force  called the resultant database ‘woefully incomplete’ and ‘useless for research or making conclusions about living donor safety’. In late 2011, they again admitted, the LDF [living donor followup] forms were too incomplete for analysis

So if we don’t have one year of decent data, how can transplant centers make assurances about a living donor’s lifetime? Well, we have the press barrages for two different studies to blame for that.

 

The first is John Hopkins’ promotion of Segev’s “landmark study”. The press release claimed that living kidney donors “are likely to live just as long as” non-donors. The study, however, only looked at kidney donors up to 15 years post-donation (median 6.3 years). If the average living kidney donor was 65 years old at the time of donation, the press release might have some credence. But they’re much younger: from 35 years of age in 1988 to 41 in 2008. From that perspective, discovering the “risk of death [at 56 years old] was no higher for live donors” isn’t terribly comforting. Taking that same measure when the kidney donors are 78 years old, the average U.S. life expectancy, would be much more significant.

Our second author, Ibrahim, from the University of Minnesota Medical Center, seemingly forgot “how healthy” living kidney donors were and compared their expected death rate to that of the general population. His conclusion, that kidney donors have a death rate “similar” to a group “with coexisting medical conditions (e.g., heart and kidney disease) that would make them ineligible for kidney donation”, is far different than saying living kidney donation doesn’t decrease a person’s lifespan.

Ibrahim’s “ground breaking report” is also responsible for the statements regarding living donors’ future kidney health. The kidney donors at the single transplant center he examined underwent dialysis at a lower rate than the general population. The media attention failed to mention that during the evaluation process, prospective living kidney donors are screened for diabetes and hypertension, the two biggest causes of end-stage renal disease (44% and 30%, respectively). A lower rate of kidney failure than the general population is expected.

 

 

Unfortunately the University of Wisconsin Medical Center isn’t alone in spreading these “Living kidney donation doesn’t affect your life expectancy and/or kidney disease risk” mischaracterizations (the following are only a sample):

 

The transplant industry has gone out of its way to tout living donors as healthier than the general population. If removing a kidney from a healthy person produces an individual with risk comparable to the general population (as Ibrahim and Segev imply) then living kidney donation does the opposite of what the above transplant centers claim. It actually increases a donor’s risks of kidney disease and shortens their life spans.

Because living kidney donors are NOT the general population, at least not before they take our kidney.

 

 

ETA July 2014: Two recent studies have indicated that living kidney donors experience 8-11x increased risk for end-stage renal disease as compared to a well-matched cohort.

Categories
Advocacy Living Donor Misinformation Living Donor Risks Living Kidney Donor

Bring On the Living Kidney Donation Propaganda Machine

Anyone who’s paid even a little attention to the transplant industry understands there’s a lot of questionable vocabulary around the whole thing (Donate Life, Be the Match, Give the Gift of Life, Be a Hero, etc), and those of us who live in a post-Mad Men era know that marketing is often less than truthful.

But then there’s this, which descends right into lying territory.

 

 1. Will donating a kidney affect my life span?

No. After one kidney is removed, the remaining kidney will adjust to filter as much as two kidneys would normally. The one functioning kidney is enough to remove all the metabolic wastes from body completely.

And

5. Does donating a kidney have risks for kidney donor?

Generally speaking, donating a kidney will not affect the life span or lifestyle. However, the surgery itself may have risks just like other surgeries.

6. Can donating a kidney affect having children?

Women after kidney donation still can get pregnant successfully because the surgery does not affect their reproductive organs.

7. What are the long-term effects for kidney donors?

The current research has shown that there are few long-term effects on the kidney donors. Mortality rates is the same or better than the general population.

 

Below was a “Have questions?” form, so I submitted the following:

 

This article is full of falsehoods. We have no comprehensive short or long-term data on LDs health and well-being so we have no idea if donating a kidney affects one’s lifespan. The Ibrahim and/or Segev studies do not proclaim any such thing, despite what their press releases declare. Segev was based on a ‘woefully inadequate’ database while Ibrahim was single-center and overwhelmingly white. Neither study actually followed LDs long-term.

As for pregnancy post-donation, both Reister and Ibrahim in 2009 found that LKD women were at higher risk of gestational diabetes, gestational hypertension, proteinuria and preclampsia. They also found that post-donation pregnancies had a higher likelihood of fetal loss and lower chance of full-term delivery.

There’s marketing and then there’s propaganda. This article is most-assuredly the latter. You should be ashamed of your deception.

 

 

A relevant side note: I perused the About Us page which says very little about exactly who the organization or people are who run the page. In other words, the whole thing looks more than a little sketchy. Unfortunately, most people looking for information will probably be drawn in by the official, medical appearance and tone, not realizing they have no idea if the source is credible. When it comes to one’s health, suspicion and curiosity are far better than blind trust.