A patient-centered approach in designing a kidney transplant decision aid

Abstract: The kidney transplant decision aid tool (https://www.srtr.org/tools/kidney-transplant-decision-aid/) was designed, created, and included as part of the Scientific Registry of Transplant Recipients (SRTR) resource website. The decision aid tool was created with input from patients with kidney disease and the doctors who care for them. An extensive information gathering and testing process with user-centered approach was implemented. Ten interviews and 4 focus group discussion sessions were held with an average of 4.5 patients in each group to gather preliminary design and content directions. Two additional focus groups with a total of 12 kidney transplant providers and 4 additional national focus group discussions with a total of 19 patients were held afterward to discuss the created content and design approach. Finally, 15 individual patient testing sessions were conducted to refine the content, design, and navigation of the tool. The tool is intended to be used during patient’s visit with their doctor as the patient learns about kidney transplant. Our goal is to provide informative materials to empower patients by helping them understand treatment options and outcomes. The doctor will guide patient through the tool and explain the information to help them to make informed decisions.The decision aid tool contains concise information to compare the pros and cons of dialysis vs. transplant treatments, living donor vs. deceased donor transplant, accepting higher quality vs. lower quality deceased donor kidney offers, and increased infectious risk kidneys vs. standard infectious risk kidneys. We also created a calculator to estimate a patient’s likely outcomes on the kidney transplant wait list based on the transplant regions or center and the individual’s medical condition. Preliminary testing suggests that patients find the tool and the likely outcomes helpful in leading to informative decision making.

Keywords: User Experience Design, Design Process, Kidney Transplants, User Testing

DOI: 10.54941/ahfe1004234

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