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Follow-Up Living Donor Research Living Kidney Donor OPTN Registry

Why Transplant Centers Have Incomplete Living Donor Follow-up

 

The authors examined the follow-up data on living donors who donated in 2008-2012 using the 2013 (or new/current) standards.

 

“Complete follow-up at 6, 12, and 24 months was 67%, 60%, and 50% for clinical and 51%, 40%, and 30% for laboratory data, respectively, but have improved over time.”

“Donor risk factors for missing laboratory data included younger age 18–34, black race, lack of insurance, lower educational attainment, >500 miles to center, and centers performing >40 living donor transplants/year.”

 

Some intersectionality happening here:

Younger living donors are more likely to be uninsured

Folks with less education are more likely to be in lower paying jobs and therefore, more likely to be uninsured

 

The fact that folks who travel to donate are less likely to return for follow-up is yet *another* reason why we should find ways to allow people to donate near their home.

 

Since I can only see the abstract, I’m not sure how they calculated the incomplete follow-up with transplant volume. I’m assuming they’re using percentages versus raw numbers, because it makes more sense that way. Point being, if high volume centers are prone to more incomplete follow-up,  it’s reasonable to say they’re less attentive to their living donors in general, which doesn’t bode well for the evaluation or informed consent processes, not to mention, the long-term health and well-being of the donors.

 

The Secretary of Health mandated one year of follow-up on all living donors in 2000. Yet data submission is still abysmal. Yes, OPTN paid lip service to the importance of living donor data with the new/rehashed policy in 2013, but we have no way of knowing if the situation will improve. After all, there’s still no indication that any center will be penalized for not complying, and there’s no way for living donors to know what data is being submitted on their behalf. Without such teeth, what’s to stop a center from carrying on as usual and/or submitting false data? If history is any indication, it’s not as if they have anything to fear if they do.

 
Schold JD, Buccini LD, Rodrigue JR, Mandelbrot D, Goldfarb DA, Flechner SM, Kayler LK, & Poggio ED (2015). Critical Factors Associated With Missing Follow-Up Data for Living Kidney Donors in the United States. American journal of transplantation : official journal of the American Society of Transplantation and the American Society of Transplant Surgeons PMID: 25902877

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