Patients with kidney failure have different options when choosing the treatment they feel is best for them, and it’s not always an easy choice to make.
According to Dr. Amy Waterman, Associate Professor in the Division of Nephrology at UCLA, and Deputy Director of the Transplant Research and Education Center (TREC) at the Terasaki Research Institute, “Patients want to choose the treatment options for kidney failure that help them live the longest. To do that, they have to learn a lot of information about different treatments that can vary based on their health and where they live.”
A new resource is available to help kidney patients understand their condition, and assist them in making healthcare decisions. Part of the family of educational programs available through Explore Transplant, My Transplant Coach is an interactive, online, video-based decision aid for patients with kidney failure. It uses animated videos and personalized graphs to help patients understand what treatment options are available, so they can make informed decisions that are right for them.
The videos in My Transplant Coach feature a transplant professional, “Tracy”, speaking to different patients. She explains the risks and benefits of kidney transplant vs. dialysis, the types of deceased donor kidneys available and the benefits and risks of each type, and the benefits and risks of living donor kidney transplant. She also discusses why people choose to get a transplant, or choose to donate a kidney, and addresses some common myths and questions about kidney transplant.
The decision aid includes an interactive form, filled in by the patient, which compares expected survival rates for similar patients choosing living or deceased donor transplant when compared to dialysis. Expected survival is adjusted for body size, age, sex, race, blood type, length of time on dialysis, location, and other medical factors. The data entered is used to produce clear, health-literate graphs.
The interactive graphs show patients how many people with similar characteristics are expected to be living after 5 years based on the treatment chosen, what happens to similar people who choose to wait for a kidney from a deceased donor in the same area for 5 years, and how long, on average, similar patients live after kidney transplant, depending on what type of kidney they receive. Patients can email these graphs to themselves to refer back to, and to share with doctors and loved ones.
My Transplant Coach was conceived and designed from the ground up around evidence-based health literacy practices. It’s expected to make a major contribution to the field of kidney transplant and to be a model for future health literate multi-media decision aids in healthcare. The tool was validated with over 200 patients at leading transplant centers in Boston and L.A. The results were published in a peer-reviewed journal1 and presented at the 2017 American Transplant Congress.
Catina O’Leary, PhD, President and CEO of Health Literacy Media, said, “Health Literacy Media is thrilled to have partnered on the development of My Transplant Coach — a patient facing, health-literate and accessible multi-media educational tool. Tools like this that provide patients and their families access to clear and accurate health information when and where they want it are critical to support people in making informed treatment choices.”
An important health literacy principle in this tool is the focus on personalized information and an acknowledgement of the emotional concerns of patients, not just their health concerns. Using the video platform, the tool does not just provide numbers, it provides context, and discusses risks and benefits for both patients and potential donors. My Transplant Coach guides users through the facts in a warm and interactive environment, reassuring them that they are the experts in their own lives and the only people who can know what decision is right for them. It provides important information on the value of living donation and suggests approaches to overcome the fear and hesitation common in patients facing this difficult choice.
Dr. Waterman said, “We’re hopeful that this tailored educational resource, now made available online for everyone, will help patients arrive at their appointments understanding their options and ready to ask questions of their providers.”
My Transplant Coach is part of a collaboration across three top health organizations: UCLA Transplant Research and Education Center (TREC), Health Literacy Media (HLM), and Xyn Management. TREC designs and conducts research and educational interventions about kidney disease, transplant, and living donation. HLM specializes in improving health literacy through clear communication trainings, plain language messaging and design, audience research, content development, and active interventions within underserved communities. My Transplant Coach is part of HLM’s drive to see health literacy in action–using health literate tools and documents to make a direct difference in lives of patients and to aid providers in explaining complex decision-making information simply. Xyn Management is a technology company dedicated to improving the care of transplant patients through the use of predictive analytics, quality assurance software, and improved patient reach.
My Transplant Coach was funded in part by Sanofi Genzyme, a biopharmaceutical company that focuses on developing specialty treatments for debilitating diseases that are often difficult to diagnose and treat, providing hope to patients and their families.
1. Axelrod DA, Kynard-Amerson CS, Wojciechowski D, Jacobs M, Lentine KL, Schnitzler M, Peipert JD, Waterman AD. Cultural competency of a mobile, customized patient education tool for improving potential kidney transplant recipients’ knowledge and decision-making. Clin Transplant. 2017 May;31(5). doi: 10.1111/ctr.12944. Epub 2017 Apr 9.