A team of 20 members from Ontario transplant hospitals and dialysis centres at the general Explore Transplant Ontario meeting, fall 2015
Many people know what diabetes and high blood pressure are. However, less know that patients who have diabetes or high blood pressure can also lose the functioning of their kidneys, a disease called End-Stage Kidney Disease. When a person’s kidney is functioning at less than 10%, patients must start dialysis, or be tested for a kidney transplant. During dialysis treatment, a machine filters their blood of waste and unwanted water from the blood. For those who are able to get a kidney transplant, research has shown that patients live longer than patients who remain on dialysis.
In Ontario, there are more than 17,000 patients with End-Stage Kidney Disease. (Statistics from Canadian Organ Replacement Register Annual Report Treatment of End Stage Organ Failure in Canada, 2004 -2013.) Many of these patients have not learned what a transplant requires and whether they would be interested in a deceased or living donor transplant. They have lots of questions about the surgery and recovery and how their life would change with a transplant. People who might want to donate a kidney also have to learn about the risks and benefits of living donation.
A first for UHN and kidney organizations across Ontario
Dr. Istvan Mucsi, a nephrologist in the Multi-Organ Transplant Program at the University Health Network (UHN) and Dr. Amy Waterman, Associate Professor at University of California- Los Angeles’ Division of Nephrology have teamed up with 20 members from Ontario, dialysis centre’s and hospitals to adapt a transplant education program called, Explore Transplant Ontario. Explore Transplant Ontario will provide video and print education about kidney transplant and living donation for kidney transplant patients, their caregivers, potential living donors, and the public.
“I am so pleased to be a part of expanding a program that is being used in the United States for Canadian patients and their family members and friends. When a person’s kidneys fail, it can be very scary, but knowledge is power. We want Explore Transplant Ontario to help patients understand kidney transplant, living donation and make the treatment choice that is right for them. We also want to help more family and friends learn how they can help, particularly in considering whether they might be living kidney donors,” says Dr. Waterman.
Three programs offered by the American version of Explore Transplant
The data speaks for itself
Although patients live longer with a transplant, only about 1,700 of the 11,000 patients in Ontario are on the transplant waiting list. Only 503 transplants happened in 2013. Cultural differences, language barriers, fears about transplant, higher levels of anxiety and depression, and lack of time for providers to educate are just a few of the obstacles which prevent transplants from happening. Many people also don’t know that they could be living donors to help their family members.
“Explore Transplant Ontario will help a patient think about what might motivate them to pursue transplant, address commonly held concerns about deceased and living donor transplantation, share real-life transplant stories of recipients and living donors and present a series of actions that an interested patient could take to pursue transplant,” says Dr. Mucsi “Our ultimate goal is to have Explore Transplant Ontario available in all medical settings where kidney patients are learning. From family doctors, too kidney disease clinics to transplant centers. We also want patients to watch these videos with their family members and friends. We want to build a pipeline of education to ensure that every patient and everyone who cares about them has access to information they need to decide about getting waitlisted or working towards living donor transplants.”
Strong support from those involved
For Explore Transplant Ontario to become a reality, a team of 20 members who participated at the general Explore Transplant Ontario meeting will review and create information and teaching tools for this program. Videos will be shot explaining the process of donor and recipient surgery by Canadian providers from UHN and the entire province. Patients of different races and ethnicities and their living donors will share their transplant and donation stories. This pilot research study is funded by the MSH-UHN AMO Innovation Fund and is being led by Drs. Mucsi and Waterman in 2016.
For more information about Explore Transplant Ontario, please contact Dr. Mucsi at Istvan.Mucsi@uhn.ca