Project Summary/Abstract
The current process to allocate kidney donor organs to candidates who are waiting for a transplant results in
high numbers of discarded donor organs, an increased cost and burden of care, and high mortality while on the
waiting list. This system is characterized by high rates of offers declined by either clinicians at transplant
centers or patients. Patients receive education about donor offers during their transplant evaluation, and this
evaluation is known to be an overwhelming experience. Patients who are accepted onto the waitlist may then
wait several years before receiving a call about an offer, which may come late at night while patients are
sleeping and requires a decision within 30 minutes. Retention of education from years ago is low, and patients
who are offered a donor with potential risk factors, such as an exposure to infectious disease, may decline the
offer due to risk aversion, anxiety, and fear. Patients are free to decline offers without penalty; however,
evidence consistently shows that accepting an offer provides a survival benefit in nearly all cases. Among
candidates who have received at least one donor offer, over 30% of patients die on the list after offers to them
are declined. Shared decision making (SDM) is a method for helping patients think, talk, and feel through how
to handle the patient’s unique situation. SDM is conducted in conversations between patients, family, and
clinicians with the purpose of developing a medically, practically, and emotionally desirable plan. Optimal SDM
should help patients develop a plan in advance of the actual organ offer, during the period of time patients are
waiting. The study will use an online tool, Donor Plan Donor Call (DPDC), which is completed by patients after
being placed on the waiting list but in advance of an offer. The online tool is preparation for a virtual or in-
person SDM session with their transplant provider. The DPDC tool was informed by behavior change theory
and was developed following a human-centered design process over multiple iterations with user feedback.
This patient-centered tool was developed using a systems approach to complement other interventions to
support offer decisions made by clinicians. The proposed research will provide pilot data using a randomized
trial of usual care compared to the SDM intervention using the DPDC tool with patients and providers at 2
sites. The pilot randomized trial will determine the impact and quality of SDM for patients to plan for an organ
offer (Aim 1). The primary outcome will be willingness to accept donor organs at increased risk of discard.
Secondary analyses will include changes in decisional conflict, knowledge, patient hope and distress, and
duration of time spent making a decision. The study will evaluate the acceptability of SDM with DPDC, barriers
to adoption of the intervention, and other leading indications of implementation success with patients and
providers (Aim 2). This research will allow us to refine the intervention and implementation to facilitate a fully
powered multi-center randomized trial. This proposal fills a critical need to improve donor offer decisions to
reduce patient mortality, the negative health effects from time on dialysis, and discards of viable donor kidneys.
