Tailored education system to benefit kidney transplant patients

(LOS ANGELES) – Patients with chronic kidney disease and end-stage renal disease have to go to a dialysis center for hours at a time, several times a week for the rest of their lives. Patients on dialysis have strict dietary restrictions, and have difficulty maintaining a job or school with all of the hours that are spent at the dialysis center each week. Often, dialysis is the main treatment doctors tell patients about, so patients go along with it. However, a living donor kidney transplant is the most effective treatment for end-stage renal disease. Past research has shown that doctors typically spend about a half an hour giving patients large quantities of information all at once about transplantation, which causes patients to become overwhelmed with the decision.

The challenges of deciding how to manage kidney disease are even greater for low socioeconomic-status patients, or patients who speak a primary language other than English. To help overcome these challenges, and to help patients feel confident about making an informed choice in their kidney disease care, Dr. Waterman, Deputy Director at the Terasaki Institute for Biomedical Innovation, and colleagues developed a computerized program called “Your Path to Transplant” for patients. This program tailors education using an online quiz at four different time points to gauge patient knowledge and readiness to pursue transplant. The four time points were a few weeks before transplant evaluation, during transplant evaluation, and four and eight months after baseline. After the quiz at each time point, the program delivers the right education module to match patient knowledge and motivation at that point. The modules contain video and print kidney transplant education, feedback reports, access to community resources that help patients overcome socioeconomic barriers, and telephonic coaching. Breaking the education up into appropriate amounts of information in the modules at the right times in the patient journey can help to overcome the information overload and overwhelm that many patients feel when learning about their treatment options for managing their kidney disease.

In their recent publication titled “Your Path to Transplant: A Randomized Controlled Trial of a Tailored Expert System Intervention to Increase Knowledge, Attitudes and Pursuit of Kidney Transplant” in the American Journal of Transplantation, Dr. Waterman and colleagues tested their new program. The authors conducted a study at the University of California, Los Angeles Kidney and Pancreas Transplant Program on over 800 patients with end-stage kidney disease.

Results showed that patients who received the “Your Path to Transplant” education were significantly more prepared to pursue kidney transplant at four and eight months after the intervention compared to those who received standard of care. They also had a significantly greater increase in transplant knowledge compared to those who received standard of care. Those who received “Your Path to Transplant” took more small steps toward transplant, including sharing their need for a living donor, sharing educational materials about living donation, and asking potential donors to get tested for their ability to donate. Overall, 18 months later, more people who received the “Your Path to Transplant” education program received a living donor transplant, compared to those who received standard of care.

The authors state that this was “one of the longest and most comprehensive educational interventions ever to occur within a transplant center.” The findings suggest that tailored education is successful in increasing knowledge and readiness to pursue transplant and should be embedded within centers to meet patients’ educational needs as they navigate the challenging Path to Transplant.

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Additional authors on this article include John D. Peirpert, PhD, Yujie Cui, MS, Jennifer L. Beaumont, MS, Andrea Pavia, PhD, Amanda F. Lipsey, MFA, Crystal S. Anderson, MPH, and Mark L. Robbins, PhD. Financial support came from the National Institutes of Health under grants R01DK088711 and T32DK104687.

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Terasaki Institute for Biomedical Innovation

The Terasaki Institute for Biomedical Innovation (terasaki.org) is a non-profit research organization that invents and fosters practical solutions that restore or enhance the health of individuals. Research at the Terasaki Institute leverages scientific advancements that enable an understanding of what makes each person unique, from the macroscale of human tissues down to the microscale of genes, to create technological solutions for some of the most pressing medical problems of our time. We use innovative technology platforms to study human disease on the level of individual patients by incorporating advanced computational and tissue-engineering methods. Findings yielded by these studies are translated by our research teams into tailored diagnostic and therapeutic approaches encompassing personalized materials, cells and implants with unique potential and broad applicability to a variety of diseases, disorders and injuries.

The Institute is made possible through an endowment from the late Dr. Paul I. Terasaki, a pioneer in the field of organ transplant technology.