Kidney Foundation Announces Major Study Investigating Attitudes of Transplant Recipients Towards Cancer Risk


August 15, 2006

The majority of transplant recipients realize that they are now at higher risk of cancer, but this risk doesn’t rise to the top of their list of ongoing worries, according to initial reports from a long-term investigation by the National Kidney Foundation. Awareness of the risk of cancer is particularly important since post-transplant malignancies are now the second leading cause of illness and death in long-term transplant recipients. At the first World Transplant Congress, where the NKF survey is being unveiled, more than 85 abstracts are being presented on the subject of malignancy alone.

On average, a transplant recipient receiving immunosuppressive therapy is three to four times more likely than the general population to develop tumors. The general incidence of all malignancies after kidney transplantation increases with time.

Despite this risk, in general, transplant recipients said that cancer was on their minds, but they were generally more concerned about rejection and infections. People who received their transplant ten or more years ago said they experienced very little education about life after the procedure, including their increased risk of cancer. Some even said they didn’t learn they were more vulnerable to the disease until after they developed it.

“The purpose of this study was to find out if the types of education and discussions that should be taking place about cancer, particularly with long-term transplant recipients, were happening, and clearly, they are not,” said Joseph Vassalotti, Chief Medical Officer of the National Kidney Foundation. “Patients need to talk to their doctors about the best ways to prevent malignancies if they have not occurred yet, and if they have had malignancies, discuss more aggressive prevention methods, which may vary from more frequent screeningsto reducing or changing their immunosuppression.”

These findings come from the first stages of a long-term investigation by the National Kidney Foundation (NKF) regarding awareness among transplant recipients about their risk of cancer. The NKF is already building on these results by conducting a major initiative that surveys more than 500 transplant recipients, investigating further what patients know - and don’t know -- about cancer after transplant.

To investigate the crucial question of how much patients know about their risk of cancer after receiving a transplant, the NKF convened seven focus groups in four cities across the U.S., speaking to more than 50 patients. All of the participants had undergone transplantation, and some had already been diagnosed with cancer.

Across the board, people who participated in the focus groups said they take their health very seriously, and most said their doctors told them to see a dermatologist regularly. All knew to wear sunscreen, cover up while in the sun, and avoid being out in the middle of the day, when the sun’s rays are strongest.

Overall, participants said they knew there were “trade-offs” to undergoing transplantation. However, most focus group participants reported that, other than taking basic precautions, such as using sunscreen, they didn’t consider their increased risk of cancer to be much of a priority given that they knew it was a possibility, not a certainty.

Some admitted they’d forgotten about their increased cancer risk, but most said someone - most often a transplant coordinator - had warned them about it either before transplant or immediately after. Still, a few people did not recall ever being told they had an increased risk of developing cancer, and some first learned they had a heightened risk after being diagnosed with the disease.

To improve patient education, study participants suggested that healthcare workers give transplant recipients instructions about protecting themselves from skin cancer before they leave the transplant center. Frequent reminders about their increased risk of cancer - such as during check-ups and in the form of annual postcard reminders - may also help keep the issue fresh in patients’ minds, they suggested.

To address this need for patient education, the National Kidney Foundation has developed a free brochure entitled After Your Transplant: What you Should Know about Cancer." To receive copies, contact the foundation 1-800-622-9010. Funding for this project was provided as an unrestricted educational grant from Wyeth Pharmaceuticals.

The National Kidney Foundation is dedicated to preventing kidney and urinary tract diseases, improving the health and well-being of individuals and families affected by these diseases and increasing the availability of all organs for transplantation. For more information, visit www.kidney.org.