Kidney Diseases, Kidney Failure
Conditions
Keywords
Live Donor Transplant, Social Media, Education, Advocacy, Live Donor
Brief summary
This pilot study will be a clinical trial to test the feasibility and effectiveness of an educational intervention and a mobile health intervention in adults with end stage renal disease (ESRD) who have not yet identified a potential live donor.
Detailed description
Transplant candidates are hesitant to discuss their illness and the difficulties associated with dialysis, and are therefore reluctant to pursue live donor kidney transplant (LDKT). The investigators will conduct a prospective 3-arm randomized controlled trial with two novel interventions to increase live donation. Arm 1 includes LDC program and the Facebook app, Arm 2 includes just the Facebook app, and Arm 3 includes standard of care. The investigators primary objective is to demonstrate the the effectiveness of these interventions in increasing live donor transplantation rates for candidates with no prior potential live donor.
Interventions
BEHAVIORALFacebook App
This web-based mobile application allows candidates to write a simple and effective story to share with their previously built network on Facebook to help share their story and identify a potential live donor.
BEHAVIORALLive Donor Champion + Facebook App
A Live Donor Champion (LDC) is a friend, family member, or community member who serves as an advocate for the candidate in their pursuit of live donation. The investigators have developed a six-month program that provides education and advocacy training to waitlist candidates and their LDCs.
Sponsors
University of Alabama at Birmingham
Northwestern University
National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)
Johns Hopkins University
Study design
Allocation
RANDOMIZED
Intervention model
FACTORIAL
Primary purpose
OTHER
Masking
DOUBLE (Caregiver, Investigator)
Intervention model description
Patients will be randomly assigned to one of the 3 arms, where arm 1 is two interventions combined (LDC program + Facebook app), arm 2 is one intervention (Facebook app), and arm 3 is the control group (standard-of-care).
Eligibility
Sex/Gender
ALL
Age
18 Years to No maximum
Healthy volunteers
No
Inclusion criteria
* Kidney transplant candidates aged≥18 added to the waitlist in the last year with no potential live donors are eligible. * If there is an individual willing to donate, but the candidate is unwilling to consider this option or this particular individual, the candidate is eligible for the trial and may still benefit from identification of new donors or increased comfort accepting donation from others. * Participants at Johns Hopkins University or University of Alabama must speak English. Participants at Northwestern University must speak English or Spanish.
Exclusion criteria
* Candidates with live donors currently under evaluation for donation will be excluded. * Those with a previous kidney transplant will be excluded
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Live donor kidney transplantation | within 1 year of enrollment | Live donor kidney transplantation within one year of enrollment into the study will be the primary outcome and will be collected/identified through electronic medical record system. |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Live Donor Inquiries | within 1 year of enrollment | Live Donor Inquiries on behalf of candidates will be the secondary outcome and will be collected/identified through electronic medical record system. |
| knowledge of live donation | within 6 months of enrollment | knowledge of live donation of transplant candidates will be collected during the survey. |
| comfort initiating conversations | within 6 months of enrollment | comfort initiating conversations with others about live donation will be collected during the survey. |
Countries
United States
Outcome results
None listed