Live Donor Advocacy Training + Social Media for Kidney Failure
(ENGAGE Trial)

Recruiting in Palo Alto (17 mi)

+1 other location

Overseen byAndrew Cameron, MD PhD

Age: 18+

Sex: Any

Travel: May Be Covered

Time Reimbursement: Varies

Trial Phase: Academic

Waitlist Available

Sponsor: Johns Hopkins University

No Placebo Group

Trial Summary

What is the purpose of this trial?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.

Eligibility Criteria

This trial is for adults over 18 with end-stage renal disease (ESRD) who've been on the kidney transplant waitlist in the past year without a live donor. It's open to English speakers at Johns Hopkins and University of Alabama, and English or Spanish speakers at Northwestern University.

Inclusion Criteria

I speak English or Spanish.

I am open to considering new organ donors or becoming more comfortable with the idea of receiving a donation.

I speak English and am at Johns Hopkins University or University of Alabama.

+1 more

Exclusion Criteria

Those with a previous kidney transplant will be excluded

Candidates with live donors currently under evaluation for donation will be excluded.

Participant Groups

The study tests an educational program plus a Facebook app versus just the app to see if they help ESRD patients find kidney donors. The goal is to check how well these methods work in helping patients get live donors.

3Treatment groups

Active Control

Group I: Standard of CareActive Control1 Intervention

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

Group II: Live Donor Champion + Facebook AppActive Control1 Intervention

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.

Group III: Facebook AppActive Control1 Intervention

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.