Living with CKD: An E-Learning Platform for Adolescents with CKD about the Disease and its Management

摘要 慢性肾脏病（CKD）是一种进行性疾病，其特征在于肾功能不可逆的恶化。 肾功能逐渐发展为终末期肾病，需要透析或肾移植。CKD和 其共病（例如，高血压、贫血、酸中毒和代谢性骨病）需要严格治疗 坚持停止进展和改善结果。不幸的是，大多数儿科患者 CKD不遵守他们的医疗方案。这种不遵守可能产生破坏性后果， 肾衰竭肾移植排斥甚至死亡研究强调，缺乏信息 或错误的信息破坏了遵守，以及静态的教育材料如何不足以确保 坚持治疗。为了优化依从性，教育计划需要包括 行为自我管理部分。此外，基于网络的工具在CKD患者中被广泛接受 在线教育已被证明可以显著改善患有慢性病的成年人的健康状况。 利用同步的Web和移动的应用程序的独特组合， 该项目将全面开发和试点测试My Kidney Guru-一个为CKD儿童患者提供 发展适当的，互动的，引人入胜的教学和实践机会，以建立 管理CKD的知识和技能。与环境相关的计划将包括个性化的工具， 自我监测和自我管理，包括管理心理和社会心理的应对策略 慢性病的一个方面。建议的项目将实现三个具体目标：（1）充分发展 程序，包括九个模块，使用迭代的以用户为中心的开发-测试-修订过程， 确保软件为预期最终用户实现最佳可用性。(2)进行初步疗效研究， 评估该计划对改善青少年CKD和自我管理知识的影响， 依从性、过渡准备、自我管理技能、自我效能和生活质量。CKD青少年 将在6个月的干预期内完成9个模块。青少年的父母将审查 父母模块在试验开始时，青年模块在试验结束时。我们预计 青少年报告在所有领域都有重大改善。最后，我们将（3）准备产品， 通过与医疗保健提供者进行焦点小组讨论来审查该计划并收集 关于在医疗保健提供环境中实施的反馈。为第三阶段商业化做准备 在启动后，我们将最后确定修订和报告功能，并将电子商务功能纳入网站。 拟议的My Kidney Guru计划将直接解决创新解决方案的需求， 使用专门设计的动态教育和自我管理计划来提高治疗依从性 以满足CKD青少年的需求。更高的坚持和自我管理技能将转化为 这对这些年轻人的福祉有很大好处，包括降低医疗并发症和死亡率的风险。

Abstract Chronic kidney disease (CKD) is a progressive condition, characterized by an irreversible deterioration of renal function that gradually progresses to end-stage renal disease, requiring dialysis or kidney transplant. CKD and its co-morbidities (e.g., hypertension, anemia, acidosis, and metabolic bone disease) require strict treatment adherence to halt progression and improve outcomes. Unfortunately, the majority of pediatric patients with CKD do not adhere to their medical regimen. This non-adherence can have devastating consequences such as renal failure, kidney transplant rejection, and even death. Research underscores how a lack of information or misinformation undermines adherence, and how static educational materials are not sufficient to ensure adherence to treatment. In order to optimize adherence, there is a need for educational programs to include a behavioral self-management component. Moreover, web-based tools are well accepted among CKD patients and online education has been shown to significantly improve health outcomes for adults with chronic illness. Leveraging a unique combination of synchronized web and mobile applications, this 3 year SBIR Phase II project will fully develop and pilot test My Kidney Guru—a program that will offer pediatric patients with CKD developmentally appropriate, interactive, and engaging instruction and practice opportunities to build knowledge and skills to manage CKD. The contextually-relevant program will include personalized tools for self-monitoring and self-management including coping strategies for managing psychological and psychosocial aspects of a chronic condition. The proposed project will accomplish three specific aims: (1) Fully develop the program, including nine modules, using an iterative user-centered development-testing-revision process to ensure the software achieves optimal usability for intended end users. (2) Conduct a pilot efficacy study to assess the program’s impact for improving adolescents’ CKD and self-management knowledge, treatment adherence, transition readiness, self-management skills, self-efficacy, and quality of life. Adolescents with CKD will complete the nine modules over a 6-month intervention period. Parents of adolescents will review the parent module at the beginning of the trial and the youth modules at the end of the trial. We expect adolescents to report significant improvements in all areas. Lastly, we will (3) prepare the product for commercialization by conducting focus groups with healthcare providers to review the program and gather feedback regarding implementation in healthcare delivery settings. In preparation for Phase III commercial launch, we will finalize revisions and reporting functions, and integrate e-commerce functions into the website. The proposed My Kidney Guru program will directly address the need for innovative solutions to effectively increase treatment adherence using a dynamic education and self-management program designed specifically to meet the needs of adolescents with CKD. Greater adherence and self-management skill will translate into significant benefits in the well-being of these youth, including lower risk for medical complications and mortality.