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

 描述（由申请方提供）：慢性肾脏病（CKD）是一种进行性疾病，其特征为肾功能不可逆恶化，逐渐进展为终末期肾病（ESRD），需要透析或肾移植。CKD及其合并症（例如高血压、贫血、酸中毒、代谢性骨病）需要严格的治疗依从性，以阻止进展并改善结局。青春期是一个关键的过渡时期，青年人承担起管理其疾病的主要责任，父母的监督减少。然而，患有CKD的青少年的疾病知识（对疾病及其后果的理解）和自我管理技能已被证明是差的，代表自我管理的主要障碍、对治疗方案的不一致承诺和次优的健康结果。CKD/ESRD儿科患者的药物治疗依从性是多因素的，也是一个重大挑战，尤其是在青少年和年轻成人人群中。CKD可以是沉默的，不遵守的后果不会立即引起患者的注意。这种不遵守行为具有破坏性影响。青少年ESRD的10年生存率> 80%，尽管医学进步，青少年的肾移植损失超过任何其他人群。此外，在14至16岁之间接受首次肾移植的青少年在移植后的随访中移植物丢失和预后不良的风险最高。对各种慢性疾病依从性研究的回顾强调了信息在决定依从性方面的重要作用。虽然教育是必不可少的，但文献强调，静态的教育材料不足以确保坚持治疗。事实上，对坚持性研究的回顾表明，在教育计划中加入行为自我管理成分可以优化坚持性。基于网络的工具在CKD患者中得到了很好的接受，在线教育已被证明可显着改善慢性病成人的健康结果。有鉴于此，基于技术的培训有可能既吸引青少年参与，又支持针对个人治疗方案的教育和自我管理技能。这个为期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）与患有CKD的青少年、医疗保健提供者（即，医生、护士、营养师）和CKD青少年的父母;和（3）为II期全面发展做准备。拟议的My Kidney Guru计划将直接解决对创新解决方案的需求，以使用专门为满足CKD青少年需求而设计的动态教育和自我管理计划来有效提高治疗依从性。更高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着好处，包括降低医疗并发症和死亡率的风险，以及降低医疗成本。

 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.