Expanding Live Donor Kidney Transplantation Through Advocacy Training and Social Media (ENGAGE)

Johns Hopkins University

Status: Active, not recruiting

Conditions: Kidney Failure; Kidney Diseases

Treatments: Behavioral: Live Donor Champion + Facebook App; Behavioral: Facebook App

Study type: Interventional

Funder types: Other; NIH

Identifiers

NCT03099434

R01DK111966 (U.S. NIH Grant/Contract)

IRB00125128

Details and patient eligibility

About

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.

Full 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.

Enrollment: 775 patients

Sex: All

Ages: 18+ years old

Volunteers: No Healthy Volunteers

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

Trial design

Primary purpose: Other

Allocation: Randomized

Interventional model: Factorial Assignment

Masking: Double Blind

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775 participants in 3 patient groups

Live Donor Champion + Facebook App

Active Comparator group

Description:

The LDC program consists of 6 monthly sessions of approx. 1 hour each. Each LDC session is led by a transplant physician or clinical coordinator. LDC sessions incorporate formal didactics, active-participant learning, personal stories, moderated group discussions, role-playing, and other skill-building exercises. LDC sessions are as follows: 1) education about ESRD, KT, and LDKT 2) communication skills building 3) Exploring social networks 4) sharing successful donor and recipient stories 5) encouraging candidate self-efficacy. At session 3, the the Facebook app will be incorporated and given to candidates. The Facebook app provides step-by-step instructions for creating a Facebook post that details each waitlist candidate's struggle with ESRD and their need for a live donor. The post is then uploaded to Facebook so it can be shared with the candidate's Facebook social network.

Treatment:

Behavioral: Live Donor Champion + Facebook App

Facebook App

Active Comparator group

Description:

The Facebook app provides step-by-step instructions for creating a Facebook post that details each waitlist candidate's struggle with ESRD and their need for a live donor. The post is then uploaded to Facebook so it can be shared with the candidate's Facebook social network. The Facebook App prompts users with specific questions to create a narrative. Links to supplemental resources are auto-populated into the post to provide anyone that views the post with vetted information about the risks, benefits, and process of live donation. Candidates using the Facebook app attend one focus group session held at the transplant center where they are provided with verbal instructions and visual demonstrations of installation and use of the Facebook app.

Treatment:

Behavioral: Facebook App

Standard of Care

No Intervention group

Description:

Standard of Care does not include any of the interventions detailed above, but rather normal routine care as this is the control group.