Technological Innovations for Live Kidney Donor Follow-up Care Management

项目摘要 Macey L.Henderson博士，JD，博士，约翰霍普金斯大学外科学系研究人员 医学部。她寻求获得导师研究科学家发展奖，以获得培训和 在以患者为中心的研究、定性方法、移动健康干预开发和随机对照试验方面的经验 设计。活体供肾移植(KT)为终末期肾病(ESRD)患者提供及时的治疗 结果优于透析或已故供者KT的治疗。但对于6000多名活体肾脏捐赠者来说 (LKD)每年做出牺牲的人，以及10万+生活在一个肾脏中的人，肾切除术代表着 肾脏疾病和其他合并症的风险增加。亨德森博士是以前的肾脏捐赠者， 她的职业生涯致力于改善终身捐赠者的体验。目前，在医疗保健方面最显著的差距 LKDS是缺乏定期的医学随访。虽然几乎不足以真正照顾LKD(政策仅要求 24个月的跟踪调查)，事实证明，即使是执行这一基本要求也几乎不可能： 2013-2015年间的LKD在6、12和24个月的随访率仍然只有68%、62%和53%。 自政策要求以来没有进一步改善，即使面对对谁的中心的纪律处分 没有达到随访基准：显然，移植中心目前缺乏改善LKD的工具 订婚。鉴于目前LKD后续行动系统的令人尴尬的失败，替代办法 对于医学界来说，最紧迫的是维护其照顾这些利他主义的、处于危险之中的人的义务 个人。移植中心列举的后续障碍，包括管理负担、成本和缺乏 患者参与度，可以通过利用电子通信和移动医疗(MHealth)来克服 方便、低成本、易扩展的技术。 该项目的目标是：1)分析LKD采用mHealth的偏好和障碍，以及 移植提供者，2)开发一个功能强大的mHealth系统，以支持LKD的随访和参与， 3)试行mHealth系统，并设计未来干预的随机对照试验。 这项建议为亨德森博士提供了完成拟议研究所需的培训。这一知识 可以支持制定以患者为导向的ESRD预防策略，促进健康维护 行为，并为我们的新型mHealth系统的随机对照试验奠定了基础。我们的发现 将解决在如何改善LKD的随访和患者参与度方面的关键知识差距。 进行这项研究将扩展亨德森博士的技能，包括以患者为中心的研究、定性研究 方法，mHealth干预开发，以及使她向独立过渡的RCT设计。

Project Summary Dr. Macey L. Henderson, JD, PhD, is research faculty in the Department of Surgery at Johns Hopkins School of Medicine. She seeks a Mentored Research Scientist Development Award in order to gain training and experience in patient-oriented research, qualitative methods, mHealth intervention development, and RCT design. Live donor kidney transplantation (KT) offers patients with end-stage renal disease (ESRD) timely treatment with superior outcomes to dialysis or deceased donor KT. But for the 6000+ live kidney donors (LKDs) yearly who make the sacrifice, and the 100,000+ living with one kidney, nephrectomy represents an elevated risk of kidney disease and other comorbidities. Dr. Henderson is a previous kidney donor and has dedicated her career to improving the lifelong donor experience. Currently, the most striking gap in the care of LKDs is the lack of regular medical follow-up. While hardly adequate for true care of LKDs (policy only requires follow-up to 24 months), implementation of even this rudimentary requirement has proven nearly impossible: LKDs between 2013-2015 still have only 68%, 62%, and 53% successful follow-up at 6, 12, and 24 months, with no further improvement since the policy requirement, even in the face of disciplinary action to centers who do not meet follow-up benchmarks: clearly transplant centers currently lack the tools to improve LKD engagement. Given the embarrassing failure of the current system of LKD follow-up, alternative approaches are of the utmost urgency for the medical community to uphold its obligation to care for these altruistic, at-risk individuals. Follow-up barriers cited by transplant centers, including administrative burden, cost, and lack of patient engagement, may be overcome by leveraging electronic communications and mobile health (mHealth) technologies which are convenient, low cost, and easily scalable. The aims of the project are: 1) to analyze preferences for and barriers to adoption of mHealth by LKDs and transplant providers, 2) to develop a functional mHealth system to support LKD follow-up and engagement, and 3) to pilot the mHealth system and design a future randomized control trial of this intervention. This proposal gives Dr. Henderson the training required to complete the proposed research. This knowledge can support the development of patient-oriented ESRD prevention strategies, promote health maintenance behaviors, and lay the foundation for a randomized controlled trial of our novel mHealth system. Our findings will address a critical knowledge gap in how follow-up and patient-engagement for LKDs can be improved. Conducting this study will expand Dr. Henderson's skillset to include patient-oriented research, qualitative methods, mHealth intervention development, and RCT design enabling her transition to independence.