House Calls and Decision Support: Improving Access to Live Donor Transplantation

For most adults in late Chronic Kidney Disease (CKD Stage 4 or 5), kidney transplantation
yields superior outcomes compared to long-term dialysis. Unfortunately, the demand for kidney
transplantation far exceeds the supply of deceased donor organs. For those patients with
healthy and willing living kidney donors, live donor kidney transplantation (LDKT) produces
superior graft and patient survival rates, lower acute rejection rates, more rapid
improvements in functional status, and lower healthcare costs. However, there are profound
racial and income disparities in access to LDKT. Minorities, especially Blacks and Hispanics,
are substantially less likely to receive LDKT compared to Whites. Also, the overall decline
in LDKTs in the United States in recent years has been more pronounced for Blacks and
patients with less household income. These lower LDKT rates contribute to longer waiting
times for transplantation, more dialysis exposure, higher likelihood of death before
transplantation, declining functional capacity, less optimal graft outcomes after
transplantation, and higher healthcare costs. Therefore, interventions that expand access to
LDKT, especially those targeting minority and low-income populations, are needed given the
current and projected shortage of deceased donor organs.

There are several hypothesized barriers to LDKT for minorities and low-income patients,
including perceived discrimination, health care mistrust, social network differences, higher
rates of conditions that preclude living kidney donation, higher indirect costs of living
donation, less knowledge and more concerns about LDKT, and failure to provide culturally
competent education to patients and their support systems. In the last decade, the PI has
developed and evaluated an innovative House Calls intervention designed to remove LDKT
barriers.28-30 Health educators deliver a comprehensive and interactive program on kidney
transplantation and living donation in the patient's home with members of their social
network present. Relative to standard clinic-based educational programs, the House Calls
intervention is superior at improving LDKT knowledge, reducing LDKT concerns, increasing LDKT
willingness, and increasing rates of LDKT, particularly in minority and low-income patients
(see Preliminary Studies section). However, the effectiveness of the House Calls intervention
may be limited by the absence of decision-making aids, exposure to appropriate peer models,
and assistance in developing an LDKT action plan beyond the House Calls intervention. This
limitation and feedback from study participants have informed our strategy to enhance the
House Calls intervention by incorporating a Patient-Centered Decision Support component.
Additionally, there is a pressing need to identify factors that are most critical to the
success of the House Calls intervention and to determine whether it can reduce the gender
disparity in living kidney donation.8 Therefore, in the proposed study, we plan to pursue two
primary aims and one exploratory aim:

Primary Aims

1. Evaluate the differential benefit of adding a patient-centered decision support
component to the House Calls intervention. In a randomized controlled trial, we will
compare House Calls (HC) alone to House Calls + Decision Support (HC+DS) in a sample of
minorities and low-income patients. It is hypothesized that, compared to HC alone, the
HC+DS group will have a higher proportion of patients with LDKT by the 2-yr study
endpoint (primary outcome) and higher proportions of patients with ≥1 live donor
inquiry, ≥1 live donor evaluation, and in LDKT Readiness Stages 4/5 by the 12-wk
assessment (secondary outcomes).

2. Identify mediators of the relationship between the interventions and the occurrence of
LDKT. We will investigate a set of mediators through which House Calls may increase the
occurrence of LDKT, including increased LDKT knowledge, change in LDKT readiness,
reduced LDKT concerns, reduced health care mistrust, the amount of time discussing LDKT
with others and the quality of those interactions, and improvement in self-efficacy
discussing LDKT with others.

Exploratory Aim

3. Examine whether the House Calls intervention reduces the gender disparity in rates of
living kidney donation. Women comprise 60% of all living kidney donors in the past
decade. We have shown that the House Calls intervention directly educates significantly
more potential living donors, including men, compared to standard clinic-based
educational approaches. We hypothesize that a higher proportion of patients receiving
the House Calls intervention (either HC alone or HC+DS) will have at least one potential
male donor evaluated and be more likely to receive a LDKT from a male living donor,
relative to a non-intervention control group, controlling for patient race/ethnicity,
gender, age, and household income.

Inclusion Criteria:

- non-White race/Hispanic ethnicity/low-income (250% below federal poverty guidelines)

- CKD/ESRD

- meets eligibility criteria for kidney transplant waiting list

- 21 years old or older

- self-reports being in LDKT Readiness Stage I, II, or III

- Resides within 3 hours driving time from transplant center

Exclusion Criteria:

- Awaiting combined kidney-liver transplant

- Awaiting simultaneous pancreas-kidney transplant

- Know or suspected cognitive impairment

- Prior participation in House Calls intervention study