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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

基本信息

批准号：
9923125
负责人：
ANDREW M. CAMERON
金额：
$ 8.84万
依托单位：
JOHNS HOPKINS UNIVERSITY
依托单位国家：
美国
项目类别：
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/9923125
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

项目摘要

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