Virtual coaching for potential kidney transplant candidates and their social support networks

项目摘要/摘要 肾移植与透析相比，显著改善了终末期肾病患者的生存和生活质量 阶段性肾病(ESKD)，但在美国约50万接受透析的ESKD患者中，只有不到五分之一是 被列入移植名单。尽管人们普遍认识到需要改善获得移植的机会，但 在服务不足的社区，包括个人在内的患者的等待名单和移植数量大大减少 社会经济地位低的人和代表性不足的种族/族裔群体的人。目前的系统用于 教育病人是压倒性的，旨在优化临床效率。潜在的移植 候选人必须完成漫长的评估过程，通常还需要额外的任命和要求 取决于合并症，同时也管理着具有高治疗负担的严重慢性病。因此，它 并不令人惊讶的是，有很高比例的患者从未进入过等待名单或活体捐赠者移植，而且 该系统无意中偏袒了健康素养和社会经济地位较高的患者。虽然障碍是 移植是复杂的、可修改的个体层面的障碍，这极大地促进了移植机会的减少。 先前的研究支持向患者及其社会支持网络(SN)提供干预，但 许多有效的干预措施过于耗费资源，难以在实践中实施。迫切需要 确定支持服务不足的患者和SNS的可行、有效的干预措施，以改善获得 肾移植。这项建议旨在进行一项试点随机对照试验(RCT)的旅程 移植(JTT)，与潜在的应聘者及其SN一起进行的虚拟咨询会议，而不是通常的 在安全网医院环境中进行移植教育(目标1)。这项研究将评估JTT对 对移植意向和行为改变决定因素的影响 干预。此外，该提案还将评估多地点随机对照试验的执行结果，包括入学情况。 比率和调查完成率，以及对患者和提供者关于障碍的定性访谈 在其他安全网医院环境中执行该议定书(目标2)。这项建议是对PAS的回应- 20-160：NIDDK任务范围内针对疾病的临床试验的小型R01，这不需要 初步疗效数据，并将促进未来的多点，全功率随机对照试验，以评估JTT对 改善服务不足人群的移植机会。这项研究议程旨在转变 移植前咨询的范例，赋予未得到充分服务的患者及其支持网络 改善围绕肾移植改变生活的关键决定。

PROJECT SUMMARY / ABSTRACT Kidney transplant compared to dialysis dramatically improves survival and quality of life for patients with end stage kidney disease (ESKD), but of the ~500,000 patients with ESKD in the US on dialysis, less than 1/5 are listed for transplant. Despite widespread recognition of the need to improve access to transplant, rates of waitlisting and transplant are substantially lower in patients in underserved communities, including individuals with low socioeconomic status and those in underrepresented racial/ethnic groups. The current system for educating patients is overwhelming and is designed to optimize clinical efficiency. Potential transplant candidates must complete a lengthy evaluation process, often with additional appointments and requirements depending on comorbidities, while also managing a severe chronic illness with high treatment burden. Thus, it is not surprising that a high proportion of patients never access the waitlist or living donor transplant, and that the system inadvertently favors patients with high health literacy and socioeconomic status. While the barriers to transplant are complex, modifiable individual-level barriers contribute significantly to low transplant access. Prior research supports an intervention provided to both patients and their social support networks (SN) but many efficacious interventions are too resource intensive to implement in practice. There is a critical need to identify feasible, efficacious interventions supporting underserved patients and SNs to improve access to kidney transplant. This proposal seeks to conduct a pilot randomized controlled trial (RCT) of Journey to Transplant (JtT), a virtual counseling session with the potential candidate along with their SN versus usual pre- transplant education in a safety net hospital setting (Aim 1). The study will evaluate the effect of JtT on intention to pursue transplant and on the determinants of behavioral change that are impacted by the intervention. In addition, the proposal will assess multisite RCT implementation outcomes, including enrollment rates and survey completion rates, as well as qualitative interviews with patients and providers on the barriers to implementing the protocol in other safety net hospital settings (Aim 2). This proposal is in response to PAS- 20-160: Small R01s for clinical trials targeting diseases within the mission of NIDDK, that does not require preliminary efficacy data, and will facilitate a future multisite, fully powered RCT to evaluate the effect of JtT on improving transplant access in underserved populations. This research agenda is aimed at transforming the paradigm of pre-transplant counseling, empowering underserved patients and their support networks to improve critical life-altering decisions surrounding kidney transplantation.