For this current phase of the larger project, the investigators will survey transplant candidates as well as the participants family and friends to understand the barriers to volunteering and evaluation. This project will examine how network characteristics are associated with eventual living donor kidney transplant outcomes and test the efficacy of evidence-based interventions designed to assist kidney transplant candidates in participant donor search on a multi-center scale.
The overall goal is to understand the process and assist participants who do not receive unsolicited offers to be evaluated as a living kidney donor in initiating and effectively conducting these critical conversations with participants kin and friends. In the search intervention, based on what they can tell investigators about the number, type, perceived health, perceived relationship, and potential willingness to donate, as well as analyses of data from the National Health and Nutrition Examination Survey (NHANES) investigators will counsel them on which members of participants family and friendship networks appear most biomedically promising as donors among the subset of these individuals that participants have not ruled out for known medical or perceived relationship reasons. In the rhetorical intervention, investigators will test non-coercive, promising verbal scripts that have proven promising in preliminary tests in vignette experiments in online and phone surveys. AIM 1: Survey transplant candidates about their social network and transplant-related attitudes, knowledge, and characteristics; and randomize participants into one of two interventions or a control group. AIM 2: Send network member participants a survey that measures potential donor attributes that are hypothesized to influence donation decisions, such as medical contraindications, blood type, health insurance status, and barriers to living donation. AIM 3: Test whether participant social networks and interventions affect donation outcomes using medical records and follow-ups provided by Penn and UAB. Investigators will create the first predictive model of potential donor evaluation and actual donation. This information is critical to improve clinical practice and efforts to ethically influence the living donor search process.
Study Type
INTERVENTIONAL
Allocation
RANDOMIZED
Purpose
HEALTH_SERVICES_RESEARCH
Masking
NONE
Enrollment
164
This intervention provides language to participants to allow them to discuss kidney transplantation with their social network.
This group will complete the candidate survey, refer members of their family and social network for participation in a web survey, and be given information about the statistical likelihood that each member of their social network will be free of contraindications for living kidney donation.
University of Alabama-Birmingham
Birmingham, Alabama, United States
Penn Medicine-- University of Pennsylvania
Philadelphia, Pennsylvania, United States
Received a living donor kidney transplant
Living donor kidney transplant received by patient
Time frame: up to 3 years
Received a deceased donor kidney transplant
Deceased donor kidney transplant received by patient
Time frame: up to 3 years
Death
Patient died during the follow-up period
Time frame: up to 3 years
Completed living kidney donor screening questionnaires
Number of completed living kidney donation screening questionnaires completed for patient
Time frame: up to 3 years
Preliminary approval from living kidney donor screening questionnaires
Number of completed living kidney donor screening that received preliminary approval for patient
Time frame: up to 3 years
Completed living kidney donor evaluations
Number of living kidney donor evaluations completed for patient
Time frame: up to 3 years
Approvals for living kidney donor candidacy
Number of completed living kidney donor evaluations that resulted in approved living kidney donor candidacy for patient
Time frame: up to 3 years
Preference for living kidney donor
A set of survey questions asked both before and after the intervention, to assess intermediate attitude outcomes regarding preference for living kidney donor
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Time frame: Immediate
Concerns about living kidney donation
A set of survey questions asked both before and after the intervention, to assess intermediate attitude outcomes regarding concerns for living kidney donation
Time frame: Immediate
Living donor kidney transplant willingness
A set of survey questions asked both before and after the intervention, to assess intermediate attitude outcomes regarding living donor kidney transplant willingness
Time frame: Immediate
Self-rated kidney transplant knowledge
Respondent is asked to rate their level of knowledge related to kidney transplantation.
Time frame: Immediate
Trust in medical institutions
Respondent is asked to rate their trust in medical institutions.
Time frame: Immediate
Religious views' effect on kidney transplant willingness
Respondent is asked how strongly they agree that their religious views affect their willingness to pursue a kidney transplant.
Time frame: Immediate