Expanding live donor kidney transplantation through advocacy training and social media

摘要 美国有超过9万人在等待肾移植。只有大约12,000人将获得 每年都有已故捐赠者进行移植，最近增加已故捐赠者的努力在很大程度上 不成功。因此，等待名单上的大多数候选人死亡的可能性高于 捐献了一个已故的捐赠者肾脏。活体供肾移植(LDKT)省去了等待和提供 存活率高，但每年新增移植不到6,000例，尽管潜力巨大 数以百万计的成年人生活在美国。更糟糕的是，西班牙裔和非裔美国人的LDKT比率最低 占候补名单30%以上的候选人。不分种族，识别活人的已知障碍 捐赠者包括缺乏教育，不愿讨论自己的疾病，以及不愿要求他人捐赠。 我们开发了两种新的干预措施来解决这些障碍。第一个是为期6个月的培训计划 通过将候选人与现场捐赠者支持者配对，将教育、宣传和工具支持结合在一起 (LDC)：接受培训以传播对ESRD、LDKT和 候选人的故事在他们的社交网络中传播。第二个是不太密集的Facebook应用程序(设计 与FB领导层合作)，利用社交媒体的广泛覆盖范围来传播意识， 促进关于候选人故事的FB帖子，提供关于ESRD和LDKT的教育链接，以及 通过脸书上的一个长期传播的故事记录了这位候选人寻找捐赠者的过程。 在我们中心的先导性研究中，两种干预措施的参与者都明显更有可能接受LDKT 与匹配的对照组相比。虽然令人鼓舞，但试点测试是非随机的，仅限于我们的 中心及其独特的患者群体。此外，目前还不清楚干预的力度有多大 必要的，即不那么激烈的FB方法或更激烈的冠军方法。为了评估真实的- 最不发达国家计划和/或Facebook应用程序在扩大 不同人群的候补候选人，我们现在建议在三个繁忙的地方测试这些干预措施 为一群基本上没有得到充分服务的异类患者提供服务的移植中心。 已故捐赠者的相对匮乏造成了严重的器官短缺；有必要转向小说 努力增加活体捐赠。发展和广泛实施具有文化能力的最不发达国家 Facebook App的干预有可能增加LDKT的总体发病率，同时 解决获得LDKT方面的差距。

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.