Expanding live donor kidney transplantation through advocacy training and social media

通过宣传培训和社交媒体扩大活体肾移植

• 批准号: 9912138
• 负责人: ANDREW M. CAMERON
• 金额: $ 62.73万
• 依托单位: JOHNS HOPKINS UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2017
• 资助国家: 美国
• 起止时间: 2017-04-01 至 2022-03-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9912138
• 关键词: Address; Adoption; Adult; Advocacy; African American; American; Awareness; Caring; Caucasians; Cessation of life; Characteristics; Chronic; Clinical; Collaborations; Communication; Communities; Country; Data; Development; Donor person; Education; Effectiveness; End stage renal failure; Enrollment; Ethnic Origin; Evaluation; Event; Facebook; Family member; Focus Groups; Friends; Future; Group Interviews; Heterogeneity; Hispanic Americans; Hispanics; Incidence; Individual; Intervention; Kidney; Kidney Transplantation; Knowledge; Leadership; Link; Midwestern United States; Organ; Outcome; Participant; Patients; Persons; Pilot Projects; Population; Population Heterogeneity; Protocols documentation; Race; Randomized; Randomized Controlled Trials; Resources; Risk; Social Network; Societies; Subgroup; Survival Analysis; Testing; Time; Training; Training Programs; Transplant Surgeon; Transplantation; United Network for Organ Sharing; United States; Viral; Waiting Lists; arm; clinical care; comparative effectiveness; design; member; novel; patient population; primary outcome; programs; prospective; public health relevance; social media; standard of care; transplant centers; treatment effect; trial comparing

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.

总结 在美国，超过90，000人等待肾移植。只有大约12,000人将获得 每年都有死者捐赠者移植，最近增加死者捐赠的努力在很大程度上是 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被 提供了一个已故捐赠者的肾脏活体供肾移植（LDKT）消除了等待， 上级存活率，但尽管有巨大的潜力，但每年的额外移植不到6,000例 数以百万计的成年人生活在美国。更糟糕的是，拉美裔和非洲裔美国人的LDKT率最低 占候补名单30%以上的候选人。无论种族如何，识别活体的已知障碍 捐赠者包括缺乏教育，不愿谈论自己的疾病，以及不愿要求别人捐赠。 我们开发了两种新的干预措施来解决这些障碍。首先是为期6个月的培训计划 通过将候选人与现场捐赠者冠军配对， (LDC)：朋友、家庭成员或社区成员，接受过传播ESRD、LDKT和 候选人的故事在他们的社交网络上。第二个是一个不太密集的Facebook（FB）应用程序（设计 与FB领导层合作），利用社交媒体的广泛影响力来传播意识， 促进FB关于候选人故事的帖子，提供ESRD和LDKT教育的链接，以及 通过一个“慢性病毒式”的Facebook故事记录候选人寻找捐赠者的过程。 在我们中心的试点研究中，两种干预措施的参与者更有可能接受LDKT 与对照组相比。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，即不太激烈的FB方法或更激烈的冠军方法。去评估真实的- 最不发达国家计划和/或Facebook应用程序在扩大世界各地的现场捐赠的有效性， 由于等待名单候选人的异质人口，我们现在建议在三个忙碌的地方测试这些干预措施。 这些移植中心服务于一组异质性的、服务不足的患者。 已故捐赠者的相对缺乏造成了严重的器官短缺;转向新的器官是至关重要的。 努力增加活体捐赠。发展和广泛实施文化能力最不发达国家 和Facebook App干预有可能增加LDKT的总体发病率， 解决在获得最不发达国家培训中心方面的差距。