A recent (Dec 2009) blog post discussed the issue of kidney patients with end stage renal disease (ESRD) who get on the UNOS transplant waiting list, but are unable to get a donor organ. Today’s entry will explore the problem of kidney patients who for some reason don’t ever get on the waiting list.

Not all patients with ESRD are good candidates for transplants. For instance, they may have one or more comorbidity factors (specifically, they are not healthy enough to undergo surgery, had cancer within the past five years, have heart disease, or have type 2 diabetes). These patients won’t get on the waiting list. However, some patients don’t get on the list for the wrong reasons. For instance, because of miscommunication, some patients are never informed that renal replacement therapy is an option for them. Among patients who are told, some decide they don’t want the transplant surgery.

All patients with ESRD should be told that a transplant is the preferred option when it is medically advisable. However, it is not clear how many patients are told this or understand it.  In a report published in Dec 2009 Pittsburgh Tribune-Review, investigators looked at Medicare records and found that at many dialysis clinics none of the patients have been informed of the transplant option and the centers had no patients on the transplant waiting list. However, the story concedes this may be due to a timing issue. The Medicare forms are filled out when the patient first visits the clinic and the patient may not be informed at that time. The records are not updated if the patient’s status changes at a later date.

Some patients don’t get on the list because of biases (possibly unconscious) by doctors when advising patients. For instance, a study published in the Oct 1999 Health Services Research shows that patients with only Medicare insurance coverage (who are more likely to be minority, female, and poor) were less likely to be placed on the U.S. transplant waiting list than patients with private insurance. Since the research only looked at statistical data rather than conducted patient interviews, it isn’t clear if the result is because 1) patients without insurance are actually less likely to be good candidates, 2) doctors are less likely to inform patients without insurance of treatment options, or 3) the patients were advised, but did not follow through. In any case though, nephrologists should be made aware of the potential bias and take steps to ensure their advice and actions do not discriminate against patients based on insurance status, race, gender, or income.

Another study in Jan 2009 J. Amer. Soc. Nephr. (subscription required) found that women over 45 are less likely to be placed on the kidney transplant list than men. This bias persists even though women are as likely to survive as men.

A study in Oct 2009 Amer. J. Transpl. (subscription required) found that African-Americans were 27% less likely than Caucasians to be recommended for kidney-pancreas transplants. Hispanics were 25% less likely to be recommended. The authors speculate that some of the bias may be due to physicians incorrectly assuming that African-Americans have type 2 diabetes and are thus ineligible for a two-organ transplant. Changes in Medicare legislation in 1999 to cover two-organ transplants increased transplant rates for all races, but did not close the gap.

Even if a patient gets on the waiting list, they may not get an organ. A study in Feb 2008 J. Amer. Soc.  Nephr. (subscription required) found that the more obese a patient was (as measured by body mass index or BMI), the more likely the patient was to be skipped for another patient on the list. It is possible that these patients had other comorbidity factors that disqualified them for a transplant, but it may also be due to a bias toward selecting non-obese patients.

What about patients who are informed of the transplant option but decide they don’t want to be placed on the list? One possible reason is that they believe that a kidney transplant should be a last resort, after undergoing dialysis. Until I decided to become a kidney donor, I thought the preferred treatment for kidney patients with ESRD was to first try dialysis and if that failed, then get a transplant. However, that is not true. Studies have shown that if the patient is a suitable transplant candidate, then an early transplant, called a preemptive transplant, results in superior outcomes and is the preferred treatment. Dialysis is used only because of the shortage of organs. Unfortunately, a recent survey reported in Nov 2009 Amer. J.  Nursing shows that up to half of kidney patients believe that dialysis must precede a transplant and 60% viewed transplantation as a last resort.

Another potential reason that a kidney patient with ESRD would decline a transplant is fear of surgery. A focus group of medical professionals conducted in South Carolina revealed fear of surgery to be one of six perceived barriers to living donor kidney transplantation among African-Americans. The results are reported in June 2006 J. Natl. Medical Assoc. The emotional stress continues after receiving an organ transplant and fear of this may also discourage accepting a transplant.

Finally, concerns about the cost of surgery and the ongoing costs of immunosuppressive medication may discourage some patients. As mentioned in an Sep 2009 blog post, Medicare covers the cost of dialysis but not antirejection drugs. So even though dialysis is expensive and leads to lower quality of life, some patients may choose it rather than a transplant because it is more affordable for them.

[Update: I added a paragraph about an article in the Pittsburgh Tribune Review.]