Improving Low-Income End Stage Renal Disease Patients' Transplant Knowledge: A Case Management Trial

Nationwide, there are almost 600,000 patients with end-stage renal disease (ESRD), or kidney failure. There are two options for ESRD patients to sustain life: dialysis, where a machine filters wastes from the blood, or a kidney transplant from a deceased or living donor. Kidney transplantation, especially living donor kidney transplant (LDKT), offers ESRD patients 3 to 17 additional years of life and improved quality-of-life compared to remaining on dialysis.

However, the majority of ESRD patients- 415,000 as of 2009 - still remain on dialysis. Although dialysis is life-saving, it only replaces 10-15% of normal kidney function and can lead to cardiovascular disease, infection, and other complications. Dialysis treatment also takes 12 to 15 hours per week, requiring many patients to stop work and go on disability. The chance of a dialysis patient being alive after 5 years without a transplant is only 38%.

A complex set of potential risks and benefits need to be considered when deciding whether to get an LDKT, particularly for low-income dialysis patients facing significant practical and financial barriers to transplant. Established chronic kidney disease (CKD) and Centers for Medicaid and Medicare Services (CMS) guidelines recommend that dialysis patients be educated about their different treatment options, the medical risks involved, and the advantages to transplant so that they can make informed transplant decisions. Since transplants within the first six months of beginning dialysis result in the best health outcomes, one Healthy People 2020 proposed 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 dialysis centers are inconsistently educated about LDKT, particularly patients who are socioeconomically disadvantaged or members of racial/ethnic minority groups.

Through a previous HRSA grant, Dr. Waterman designed the Explore Transplant (ET) education program based on Prochaska's Transtheoretical Model of Behavioral Change and her own research with over 1000 patients with kidney disease to address key gaps in patients' transplant knowledge. The mission of ET is for transplant-eligible patients to explore the option of transplant and make an informed choice after knowing the benefits and risks. Through a group randomized controlled trial (GRCT), an earlier version of ET, delivered face-to-face with patients while they were undergoing dialysis, was shown to increase patients' knowledge and informed decision-making. As a result, the Explore Transplant program won the 2009 National Association of Transplant Professionals (NATCO) Quality of Care Award. However, additional research exploring dialysis providers' ability to integrate ET in their patient care found that multiple patient, provider, and system barriers limited what can be accomplished educationally within dialysis centers. With dialysis providers reporting that they have limited time to educate patients, a more comprehensive case-management program through external organizations may be needed to supplement the inconsistent transplant education provided within dialysis centers.

Thus, for this grant, the investigators propose to test the effectiveness of another replicable and transferable solution for disseminating ET transplant education nationally for patients in chronic kidney disease (CKD) Stages 3-5: Partnering with a large health insurance organization to provide transplant education supported by telephone and mail. The important research question now requiring study is whether this dissemination strategy also can promote greater transplant knowledge for patients, particularly for the most vulnerable patients least likely to receive comprehensive transplant education from dialysis centers.