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

与 CKD 共存：为患有 CKD 的青少年提供有关疾病及其管理的电子学习平台

• 批准号: 10000973
• 负责人: Debra Childress
• 金额: $ 38.75万
• 依托单位: 3-C INSTITUTE FOR SOCIAL DEVELOPMENT
• 依托单位国家: 美国
• 财政年份: 2016
• 资助国家: 美国
• 起止时间: 2016-08-01 至 2022-07-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10000973
• 关键词: Acidosis; Address; Adherence; Adolescent; Adult; Age; Anemia; Area; Awareness; Behavioral; Cessation of life; Childhood; Chronic; Chronic Disease; Chronic Kidney Failure; Computer software; Data; Data Analyses; Deterioration; Development; Dialysis procedure; Disease; Disease Management; E-learning; Education; Educational Materials; End stage renal failure; Ensure; Family; Feedback; Focus Groups; Foundations; Goals; Graft Rejection; Health; Health Personnel; Healthcare; Hypertension; Information Resources Management; Intervention; Kidney; Kidney Failure; Kidney Transplantation; Knowledge; Literature; Manuscripts; Medical; Metabolic Bone Diseases; Misinformation; Monitor; Nonprofit Organizations; Outcome; Parents; Participant; Patient Education; Patient Recruitments; Patient-Focused Outcomes; Patients; Personal Satisfaction; Phase; Preparation; Process; Program Reviews; Provider; Psychological Stress; Psychosocial Stress; Quality of life; Readiness; Regimen; Renal function; Reporting; Research; Risk; Self Care; Self Efficacy; Self Management; Self Perception; Small Business Innovation Research Grant; Stress; Teaching Method; Technology; Teenagers; Testing; Time; Translating; Youth; adolescent patient; arm; base; commercial application; commercialization; comorbidity; coping; course development; design; developmental disease; e-commerce; efficacy study; evidence base; experience; health care delivery; improved; improved outcome; independent self care; innovation; literacy; medical complication; mobile application; mortality; pediatric patients; post intervention; programs; psychologic; psychosocial; recruit; self-management program; skills; tool; treatment adherence; usability; web app; web site; web-based tool

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.

抽象的 慢性肾脏疾病（CKD）是一种进行性疾病，其特征是肾脏的不可逆恶化 逐渐发展为需要透析或肾脏移植的末期肾脏疾病的功能。 它的合并症（例如高血压，贫血，酸中毒和代谢骨病）需要严格的信任治疗 遵守停顿计划 CKD不遵守其医疗方案。 作为肾脏衰竭，肾脏移植拒绝，甚至死亡。 或错误的信息破坏了依从性，以及静态教育材料如何没有选举权来确保 遵守治疗以优化依从性，需要教育计划 此外，行为自我管理组成部分。 在线教育已被证明对患有慢性疾病的成年人的健康状况显着。 利用同步网络和移动应用程序的独特组合，这三年SBIR阶段II 项目将充分开发和试点测试我的肾脏大师 - 该计划与Patation患者CKD患者 发展适当，互动和引人入胜的指导和实践机会 管理CKD的知识和技能。 自我监控和自我管理，包括应对管理心理和心理社会的策略 慢性病的方面。 程序，包括九个模块，使用迭代以用户为中心的开发测试 - 修复过程 确保软件为预期的最终用户实现最佳性。 评估该计划对改善青少年的CKD和自我管理知识的影响 遵守，过渡准备，自我管理技能，自我效能和生活质量 将在6个月的干预期内完成九个模块。 我们期望的审判中的家长模块和青年模块 青少年报告所有领域的重大改进。 通过与医疗保健提供者进行焦点小组的商业化来审查该计划并收集 有关在医疗保健交付环境中实施的反馈。 启动，我们将最终确定修订和报告功能，并将电子商务功能集成到网站中。 我的肾脏大师计划的支架直接解决了对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提高治疗依从性 满足CKD的青少年的需求。 在年轻人的福祉中，重大好处，包括医疗并发症和死亡率的风险更大。