Explore Transplant at Home: Improving Low-Income ESRD Patients' Transplant Knowledge

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.

For this grant, the investigators have chosen to re-partner with an organization with which
the investigators have had previous success conducting transplant education trials, the
Missouri Kidney Program (MoKP). Since MoKP subsidizes the costs of dialysis and transplant
medication for low-income ESRD patients in Missouri, they operate as an insurance company
would with respect to their 1200-patient member group. MoKP is also a natural ally for
underserved groups of kidney patients and can focus on educating them comprehensively about
DDKT and LDKT without other competing job responsibilities. Finally, they have strong,
statewide partnerships with every dialysis center in Missouri, with permission to
communicate with social workers about the needs, transplant education needs and care of
specific dialysis patients.

Therefore, in partnership with the MoKP, this grant team will conduct a group randomized
controlled trial (GRCT) of 540 low-income dialysis patients in order to assess how an
established, video-guided transplant education program, Explore Transplant, could be
incorporated within a centralized health care organization's delivery of transplant
education. The investigators will conduct an eight-month educational intervention where
patients will be randomized to receive: (1) no additional education other than what is
provided within the dialysis center; (2) a video-guided, four-part ET program delivered via
the internet or mail; or (3) a video-guided, four-part ET program with discussion
facilitated by a Transplant Educator via telephone. The investigators expect 20% attrition
over time for a final sample of 430 Black and White patients. The investigators will also
conduct considerable formative work to assess the unique difficulties faced by Black and
White low-income patients in learning about transplant online and by telephone.

The grant aims are:

Aim 1: To understand the transplant educational needs and barriers to learning faced by
low-income Black and White ESRD patients.

Aim 2: Compared to standard-of-care dialysis center education, to conduct a GRCT to assess
the effectiveness of patient-guided and case-manager-guided ET education on improving
low-income patients' DDKT and LDKT knowledge and informed LDKT decision-making.

Aim 3: To examine how patient characteristics and the quality of their dialysis center
transplant education act alone and in combination with the ET educational programs

Inclusion Criteria:

Each subject must meet the following inclusion criteria to be enrolled:

1. Participant must be 18-74 years of age.

2. Participant must self-identify as African American or White.

3. Participant must currently be on dialysis.

4. Participant must have a household income at or below 250% of the federal poverty
level.

5. Participant must be able to speak and read in English.

Exclusion Criteria:

Subjects that meet any of the following exclusion criteria are not to be enrolled:

1. Participant has a visual and/or hearing impairment that would preclude him/her from
watching and reading educational study material.

2. Participant has had a previous kidney transplant

3. Participant has previously been told that they are not a candidate for transplant.