A survey of published cases worldwide found that the one-year survival rate for people with mental retardation who received kidney transplants was 100 percent, and the three-year survivor rate was 90 percent.
“That's comparable to national survival rates for the overall population, said Steven Reiss, co-author of the study and professor of psychology and psychiatry at Ohio State University .
“From these results, there doesn't seem to be any reason to think the mentally retarded are not good candidates for transplants.”
Reiss, who is director of Ohio State 's Nisonger Center for Mental Retardation, conducted the study with Marilee Martens, a researcher at the Nisonger Center , and Linda Jones, former CEO of Lifeline of Ohio, an organization that coordinates organ recoveries. It will be published in an upcoming issue of the journal Pediatric Transplantation.
This study is the first to compile outcome results from around the world among mentally retarded transplant patients. The results help answer concerns about whether transplants would be successful in people with mental retardation, Martens said.
“Many people in the medical community have been unsure about how people with MR would fare with transplants,” she said. “But now we have evidence that it does work, and that people with MR are appropriate candidates to receive organ transplants.”
The researchers examined the medical literature to find any published cases they could about kidney transplants – the most common transplanted organ -- among people with MR. Kidneys were studied because there are few recorded cases of liver or heart transplants in people with MR.
In some cases, the researcher contacted doctors involved in the kidney transplant studies to get more information, or to find new, unpublished cases.
In the end, the study included 42 total cases in several countries, including the United States.
The researchers found one-year survival rates for 33 of the 42 patients, and all 33 survived the first year. After three years, 38 of the 42 patients were still alive.
“The results are encouraging, and show that transplants are as successful in people with MR as they are in others,” Reiss said.
In the early years of transplants, people with MR were routinely turned down for transplants because they were presumed to have a low quality of life, Reiss said. But a 1995 lawsuit in California brought by the family of a woman with Down syndrome, who was initially denied a heart-lung transplant because of her disability, helped stop obvious discrimination.
Now, transplants among people with MR are much more common, although it is not known if some people are still being turned down because of their disability.
“People with disabilities do have access to transplants, but whether we have reached equal access is impossible to say,” according to Reiss.
The importance of this study is that it eases one of the top concerns among doctors – that people with MR may not be good candidates for transplant because of medical reasons, Reiss said.
Doctors have been concerned about transplants because mental retardation is often accompanied by a variety of other medical problems which may affect transplant success. For example, people with Down syndrome have a weakened immune system and demonstrate increased incidence of heart disease, infections and malignancies.
In addition, some doctors have been concerned that the mentally retarded would not faithfully take the medicines they need after the transplant in order to prevent rejection, according to Martens.
“One of the main reasons for organ failure is that patients may not take their immunosuppressant medications as regularly as they should,” she said.
“But we don't see that with the MR population, probably because they have caregivers who are making sure they follow their instructions. Some of the doctors we talked to said compliance was better than with their other patients.”
Reiss cautioned that more study is needed because this study examined published research, and doctors may have been more likely to publish about their successful cases than those that failed.
That, combined with the fact that transplants among those with MR are relatively rare, prompted Ohio State's Nisonger Center to begin developing an international registry of organ transplants among the mentally retarded.
The registry will track people with MR who have had transplants to see how they fare, and also list those who are awaiting transplant.
“With this registry, we will be able to learn more about organ transplants in the mentally retarded and help find appropriate matches for those on waiting lists,” Reiss said.
Steven Reiss | EurekAlert!
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