Working Within an Integrated Learning Healthcare System to Improve Living Kidney Donation Knowledge Across the CKD Continuum for All Racial Groups

Today, there are 25 million Americans with chronic kidney disease (CKD) who are at risk for kidney failure and 660,000 patients with end-stage renal disease (ESRD). To sustain life, ESRD patients, among whom 31% are Black, 15% are Hispanic, and 5% are Asian, must either receive daily or weekly dialysis treatments, by which waste is filtered from the blood by a machine, or receive a kidney transplant from a deceased or living donor. Five-year survival for patients on dialysis is only 40%, compared to 74% for patients who receive a deceased donor kidney transplant (DDKT) and 87% for patients who receive a living donor kidney transplant (LDKT)1. Patients who receive kidney transplants live 5-15 years longer than if they remained on dialysis, and have a better health-related quality of life (HRQOL), including a greater likelihood of being in the workforce during their critical earning years2. While LDKT is the medically optimal and most cost effective renal replacement therapy (RRT) for patients with ESRD, LDKT rates have declined by 17% from 2004-2014. In 2014, in the U.S., 17,106 patients received a transplant (5,536 LDKTs) while 8,021 patients also died or became too ill to remain on the list, 70% of whom were racial/ethnic minorities. Of the 2,039 transplants performed in California in 2014, only 595 were from living donors (OPTN data as of 12/11/2015).

Since kidneys often fail slowly over months or years, a patient's level of kidney function is monitored over time as it decreases in nephrologists' offices nationwide. As recommended by a recent American Society of Transplantation (AST) Consensus Conference, all patients in Stage 3 (Moderate CKD), Stage 4 (Severe CKD), or Stage 5 (End Stage CKD) should receive comprehensive education about DDKT and LDKT, especially racial/ethnic minorities. Once patients reach ESRD and begin dialysis, established CKD and Centers for Medicare and Medicaid Services (CMS) guidelines recommend that dialysis patients be educated about their RRT options, the medical risks involved, and the advantages to transplant so that they can make informed RRT decisions4. Since transplants received within the first 6 months of beginning dialysis result in the best health outcomes,5 one Healthy People 2020 goal is to, "Increase the proportion of dialysis patients wait-listed and/or receiving a deceased donor kidney transplant within one year of ESRD start (among patients under 70 years of age)." Unfortunately, research has shown that many patients in CKD clinics are inconsistently educated about LDKT, particularly patients who are socioeconomically disadvantaged or members of racial/ethnic minority groups.

Without a nationally-coordinated healthcare system, it is extremely difficult to ensure that kidney patients in Stages 3-5 who are served by different health practitioners and organizations all learn about DDKT and LDKT and make informed treatment decisions. Providers also report having limited time to educate about transplant outside of transplant centers and inadequate educational materials. Thus, disseminating transplant education within a large health care system, with its fully integrated care management program, diverse membership, and ability to track a large patient population across the entire course of their kidney disease, may be an opportune way to educate large numbers of diverse patients about the opportunities for and risks and benefits of living kidney donation.

Kaiser Permanente Southern California (KPSC) is a large, integrated healthcare system providing coverage and care to over 4 million members throughout Los Angeles, San Diego,Kern, San Bernardino, Riverside, and Ventura Counties. KPSC provides coverage to nearly 65,000 patients with CKD stages 3-5. About 24% of these patients are Hispanic, 52% White, 15% Black, and 9% Asian, similar to the broader CKD population in California.

First, this team will conduct extensive qualitative and quantitative formative research to understand and compare the knowledge, informed decisionmaking and educational needs of these diverse patient groups prior to intervention. Second, they will design a Spanish-language version of ET@Home. Third, they will conduct a randomized controlled trial (RCT) of 1,200 Black, Hispanic, Asian, and White patients in CKD Stages 3-5 where patients will be randomized to receive: (1) no additional education other than what is provided within KPSC (standard-of-care); or (2) a video-guided, four-part ET@Home program delivered by mail and supported through bimonthly postcards and texting over six months. The study aims and hypotheses are as follows: Aim 1: Using qualitative methodology, to assess the LDKT educational needs of CKD Stage 3-5 patients and their support networks by race/ethnicity and primary language spoken.