Technological Innovations for Live Kidney Donor Follow-up Care Management

项目摘要 博士梅西湖亨德森，法学博士，是约翰霍普金斯学校外科系的研究人员 医学。她寻求一个指导研究科学家发展奖，以获得培训， 在以患者为导向的研究、定性方法、移动健康干预开发和RCT方面的经验 设计活体供肾移植（KT）为终末期肾病（ESRD）患者提供了及时、有效的治疗手段 与透析或死亡供体KT相比，治疗具有上级结局。但对于6000多名活体肾脏捐献者来说， （LKD）每年谁作出牺牲，和100，000+生活与一个肾脏，肾切除术代表了一个 肾脏疾病和其他合并症的风险升高。亨德森医生是以前的肾脏捐赠者， 致力于改善终身捐赠者的体验。目前，在护理方面最显着的差距是 LKD是缺乏定期的医疗随访。虽然对LKD的真正护理来说几乎不够（政策只要求 随访至24个月），但事实证明，即使是这一基本要求也几乎不可能得到执行： 2013-2015年的LKD在6个月、12个月和24个月的随访成功率仍然只有68%、62%和53%， 自政策要求以来没有进一步改善，即使面对对那些 不符合随访基准：显然移植中心目前缺乏改善LKD的工具 订婚鉴于目前LKD后续系统的尴尬失败，替代方法 对于医学界来说，最紧迫的是履行其照顾这些利他主义者的义务， 个体移植中心引用的随访障碍，包括行政负担，成本和缺乏 患者参与，可以通过利用电子通信和移动的健康（mHealth）来克服 方便、低成本和易于扩展的技术。 该项目的目的是：1）分析LKD采用mHealth的偏好和障碍， 2）开发一个功能性的移动医疗系统，以支持LKD的随访和参与， 3）试点移动医疗系统，并设计未来的随机对照试验。 本提案为亨德森博士提供了完成拟定研究所需的培训。这些知识 可以支持以患者为导向的ESRD预防策略的制定，促进健康维护， 行为，并为我们的新型移动健康系统的随机对照试验奠定基础。我们的研究结果 将解决如何改善LKD的随访和患者参与方面的关键知识差距。 进行这项研究将扩大亨德森博士的技能，包括以患者为导向的研究，定性 方法，移动健康干预开发和RCT设计，使她能够过渡到独立。

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.