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

 描述(申请人提供)：慢性肾脏病(CKD)是一种进行性疾病，其特征是肾功能不可逆转地恶化，逐渐发展为终末期肾病(ESRD)，需要透析或肾脏移植。慢性肾脏病及其合并症(如高血压、贫血、酸中毒、代谢性骨病)需要严格的治疗，以阻止病情进展和改善预后。青春期是一个关键的过渡时期，年轻人承担了管理其疾病的主要责任，父母的监督消失了。然而，患有慢性肾脏病的青少年的疾病知识(对疾病及其后果的了解)和自我管理技能已被证明很差，这是自我管理的主要障碍，对治疗方案的承诺不一致，以及次优的健康结果。CKD/ESRD儿童患者坚持接受治疗是多因素的，是一个重大挑战，特别是在青少年和年轻成人人群中。CKD可以是沉默的，不坚持的后果对患者来说不会立即注意到。这种不遵守具有毁灭性的影响。青少年发病的ESRD的10年存活率为80%，尽管医学上取得了进步，但青少年的肾移植损失超过了任何其他人群。此外，在14岁至16岁之间接受首次肾移植的青少年，移植物丢失的风险最高，移植后的后续结果更差。对一系列慢性病依从性研究的回顾强调了信息在决定依从性方面所起的重要作用。虽然教育是必要的，但文献强调，静态的教育材料不足以确保坚持治疗。事实上，对坚持研究的回顾表明，在教育项目中增加行为自我管理成分可以优化坚持。基于网络的工具在CKD患者中得到了很好的接受，在线教育已被证明显著改善了患有慢性病的成年人的健康结果。有鉴于此，以技术为基础的培训既有可能吸引青少年参与，也有可能支持为个别治疗方案量身定做的教育和自我管理技能。这项为期6个月的SBIR第一阶段项目包括三个具体目标：(1)开发My Kidney Guru原型；(2)对患有CKD的青少年、CKD青少年的医疗保健提供者(即医生、护士、营养师)和CKD青少年的父母进行原型可用性和可行性测试；以及(3)为第二阶段的全面发展做好准备。建议的My Kidney Guru计划将直接满足创新解决方案的需求，利用专门为满足CKD青少年需求而设计的动态教育和自我管理计划，有效地提高治疗依从性。更多的坚持和自我管理技能将转化为这些年轻人的健康和福祉的显著好处，包括降低医疗并发症和死亡率的风险，以及医疗成本的降低。

 DESCRIPTION (provided by applicant): Chronic kidney disease (CKD) is a progressive condition, characterized by an irreversible deterioration of renal function that gradually progresses to end-stage renal disease (ESRD), requiring dialysis or kidney transplant. CKD and its co-morbidities (e.g. hypertension, anemia, acidosis, metabolic bone disease), require strict treatment adherence to halt progression and improve outcomes. Adolescence is a critical transition time when youth take on primary responsibility for management of their illness and parental supervision drops off. However, disease knowledge (understanding of the disease and its consequences) and self-management skills of adolescents with CKD have been demonstrated to be poor, representing major impediments to self- management, inconsistent commitment to treatment regimens, and suboptimal health outcomes. Adherence to medical treatment among pediatric patients with CKD/ESRD is multifactorial and a major challenge, particularly in the adolescent and young adult populations. CKD can be silent, and the consequences of non-adherence are not immediately noticeable to patients. This non-adherence has devastating impacts. The 10-year survival rate for adolescent onset ESRD is > 80 percent and, despite medical advances, kidney transplant loss in adolescents exceeds that of any other population. In addition, adolescents receiving their first renal transplant between ages 14 and 16 have the highest risk of graft loss and worse outcomes in follow-ups post-transplant. Reviews of adherence studies for a wide array of chronic illness have underscored the influential role information plays in determining adherence. While education is essential, the literature underscores that static educational materials are not sufficient to ensure adherence to treatment. In fact, a review of adherence studies indicates that adding a behavioral self-management component to an educational program optimizes adherence. 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. Given this, technology-based training has the potential to both engage adolescents and support education and self-management skills tailored for individual treatment regimens. This 6-month SBIR Phase I project includes three specific aims: (1) develop the My Kidney Guru prototype; (2) conduct prototype usability and feasibility testing with adolescents with CKD, healthcare providers (i.e., physicians, nurses, dieticians) of adolescents with CKD, and parents of youth with CKD; and (3) prepare for Phase II full development. 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 health and well-being of these youth, including lower risk for medical complications and mortality, and healthcare cost reductions.