Expanding live donor kidney transplantation through advocacy training and social media

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Summary Over 90,000 individuals in the United States await kidney transplantation. Only about 12,000 will receive a deceased donor transplant each year, and recent efforts to increase deceased donation have been largely unsuccessful. As a result, most candidates on the waiting list have a higher chance of dying than of being offered a deceased donor kidney. Live donor kidney transplantation (LDKT) eliminates the wait and offers superior survival, but accounts for fewer than 6,000 additional transplants per year despite a huge potential pool of millions of adults living in the US. Worse, LDKT rates are lowest among Hispanic and African American candidates who account for over 30% of the waitlist. Regardless of race, known barriers to identifying a live donor include lack of education, reluctance to discuss one's illness, and hesitance to ask others to donate. We have developed two novel interventions to address these barriers. The first is a 6-month training program that combines education, advocacy, and instrumental support by pairing candidates with a live donor champion (LDC): a friend, family member, or community member trained to spread awareness of ESRD, LDKT, and the candidate's story throughout their social network. The second is a less-intensive Facebook (FB) app (designed in collaboration with FB leadership) that leverages the broad reach of social media to spread awareness, facilitating FB posts about the candidate's story, providing links to education about ESRD and LDKT, and documenting the candidate's search for a donor through a "chronically viral" Facebook story. In pilot studies at our center, participants of both interventions were significantly more likely to undergo LDKT compared to matched controls. While encouraging, pilot testing has been non-randomized and limited to our center and its unique patient population. Furthermore, it remains unclear how intense an intervention is necessary, i.e. the less-intense FB approach or the more-intense champion approach. To assess the real- world effectiveness of the LDC program and/or the Facebook app in expanding live donation among a heterogeneous population of waitlist candidates, we now propose to test these interventions at three busy transplant centers that serve a heterogeneous group of largely underserved patients. The relative dearth of deceased donors has caused a profound organ shortage; it is essential to turn to novel efforts that increase live donation. Development and widespread implementation of culturally competent LDC and Facebook App interventions has the potential to increase the overall incidence of LDKT while also addressing disparities in access to LDKT.