UNOS Kidney Transplant Learning Center: a new gold standard for transplant education

Health Literacy Media (HLM) is thrilled to announce the launch of a comprehensive UNOS Kidney Transplant Learning Center (KTLC) at www.transplantliving.org/kidney, a new feature of the Transplant Living website maintained by United Network for Organ Sharing (UNOS).

The KTLC is a comprehensive online learning center for the more than 670,000 people in the United States living with end-stage renal disease, as well as the 100,000 people on the kidney transplant waitlist, their families, and their possible living donors. HLM partnered with UNOS to create the KTLC. The new learning center is a key component of additions and updates to the recently relaunched Transplant Living site.

Kidney transplantation is a complicated decision and accepting or being a living donor is a complex process. To help people learn and think about the full range of their treatment options, the Kidney Transplant Learning Center provides a guided learning experience through the facts, risks, and benefits of:

• Dialysis

• Transplant from a deceased donor

• Transplant from a living donor

• Finding a living donor

• Becoming a living donor

The KTLC is a continuation of HLM’s Health Literacy in Action program, an ongoing effort to bring health literacy best practices to the development and operation of health information and education. Under the guidance of nationally-recognized transplant education expert, Dr. Amy Waterman from UCLA, the HLM team layered best-evidence health literacy principles onto every stage of content creation, review, and website design. From the first gathering of information, to the final touches of design, HLM carefully structured and revised every section of content to make it as easy as possible to read and understand, while staying in close contact with our education partners to maintain full medical accuracy.

The educational content of the UNOS KTLC originated from the 2016 White House Blue Ribbon Advisory Panel, a meeting of nationally recognized transplant and kidney disease education programs. The panel called for concrete actions to lower the number of people waiting on the transplant list. Together, the panel members have published hundreds of research articles about kidney transplant and education, have designed multiple transplant and living donation educational programs, and have extensive clinical expertise in the field of transplant. The KTLC project developed as a way to combine and revise the information in these programs into a single hub of simple, comprehensive education freely available to the public.

HLM gathered and structured the educational content around the transtheoretical model of stages of change. The transtheoretical model sees adopting healthy behaviors as a process, from not yet being ready to think about something to learning about it to acting on it and maintaining the behavior. Each section of the KTLC education builds on a person’s readiness to move into the next level of decision, moving people from simple information gathering to actions that will move them towards transplant or accepting a living donation.

The KTLC starts from the basics of what kidneys are and what happens when they fail and moves into a close comparison of pros and cons of each treatment option that people have, including the 2 main types of dialysis and both deceased and living donor transplant. The learning center then goes into detail about how to find a living donor and an explanation of the living donor experience, including risks and benefits.  

Throughout the content, HLM and 501creative also created a health literate, friendly interface that helps patients navigate through and understand the content. The simple icons and visualizations help users engage, driving better concentration and retention of information. The clear navigational structure helps users move through the information with a clear idea of where they’ve been and where they need to go to see the information they’re most interested in.

This health literacy first approach in developing the KTLC content not only creates a great educational platform for kidney patients and their families, but also serves as a model for how professionals can develop future health education and decision aids. HLM’s continuing work in this field is foundational to our mission to help people make good health decisions every day and continue to be a national leader in health literacy.

UNOS KTLC was developed in partnership with transplant education experts and programs from around the country, including:

• Beth Israel Deaconess Medical Center

• Duke University School of Medicine

• Emory University

• John Hopkins University

• Mount Sinai Hospital

• Northwestern University

• Temple University

• University of California Los Angeles

HLM’s strategic partners on this project included:

• American Society of Transplantation (AST)

• 501creative

• DaVita

• Donate Life America

• NATCO, The Organization for Transplant Professionals

• National Kidney Foundation (NKF)

• ORGANIZE

• Rogosin Institute

• Sanofi Genzyme

• Terasaki Research Institute

• United Network for Organ Sharing (UNOS)