As mentioned in a Nov 2009 blog post, there isn’t very much data on the long-term outcomes for live kidney donors. That’s because they are not being tracked. Further, there is little data on what attributes (independent variables) may indicate which donors (cases) are more likely to suffer adverse outcomes (dependent variables).

Harvey Mysel of Living Kidney Donors Network recently posted a link on Facebook to an article that shows that medical outcomes for living kidney donors vary by race. The study in the New Engl. J. Med. Aug 2010  (subscription required) caught my attention because two of the authors, Connie Davis and Paolo Salvalaggio, are at the Univ Washington Medical Center where my donor surgery will be performed. Dr. Davis is a nephrologist and director of the kidney transplant program. Dr. Salvalaggio is a surgeon in the program and was originally assigned to be the surgeon for my nephrectomy. (A schedule change led to a change in surgeon.)

They used a clever technique called a retrospective study to find the outcomes of donors. Rather than ask donors as they enter a transplant program to participate in a longitudinal study (called a prospective study) they looked at historical medical data after the fact. They obtained the historical medical data by matching the ID of donors in the United Network for Organ Sharing (UNOS) database with the customer database of a cooperating health insurer (the insurer is not identified, but my guess is Kaiser Permanente). Retrospective studies are fast (no need to wait several years to collect data) and inexpensive (no need to track patients for years as they move, stop cooperating, change insurance plans, etc.). However, these studies are subject to many types of sampling bias, which are beyond the scope of this blog post.

The authors make two findings. First is that some donors, both black and white, receive treatment for hypertension, diabetes mellitus, and chronic kidney disease after their surgery. Second is that black donors had higher prevalence of these morbidities than whites for all three conditions. On their own, these findings are not particularly surprising since these three diseases are very common chronic conditions and the black population as a whole has higher rates than whites.

However, it does lead to two concerns. The first is that although kidney donors are healthier than the population at large, doctors must not assume they will remain so. They should be vigilant for signs of chronic diseases among their patients who were kidney donors. This study shows that even within a few years someone who was thoroughly tested (and kidney donors get an extremely detailed examination) may begin to show symptoms of chronic disease. Hypertension, diabetes mellitus, and chronic kidney disease are often called silent killers. This study shows just how silent.

Second, the article says prevalence of these diseases among certain groups of kidney donors were in some cases as high as or higher than expected for a similar subpopulation that were not donors. This deserves additional research. Using prevalence rate (proportion who have the diagnosis) rather than incidence rate (proportion who receive their first diagnosis) may understate the seriousness of the problem. That’s because within the general population, the prevalence of these three chronic conditions is higher than it was for the kidney donors during the year in which they underwent their donor surgery. Thus, if the prevalence of these chronic conditions is the same as the general population in later years, then the incidence rate each year among kidney donors must be higher than for the general population. This may indicate that the kidney donation itself may be a factor in the evolution of the disease.

Or it could be a result of sampling bias. That is, kidney donors are more likely to have insurance and thus more likely to see a doctor who will diagnose the disease. The authors state,

“In our study, the increased prevalence of hypertension among Hispanic donors, as compared with the general population, may, in part, reflect underreporting of hypertension in this ethnic group, as compared with white respondents, in NHANES. We speculate that medical surveillance after kidney donation may mitigate barriers to the recognition of hypertension rather than differentially affect the risk of hypertension among Hispanic donors.”