Living With CKD: An E-Learning Platform for Adolescents With CKD About the Disease and Its Management
Condition: Chronic Kidney Diseases; Chronic Kidney Disease stage3; Chronic Kidney Disease stage4; Chronic Kidney Disease Stage V; Chronic Kidney Disease Stage 5; Chronic Kidney Disease Stage 2; Chronic Kidney Disease, Stage I; Chronic Kidney Disease, Stage IV (Severe); Pediatric Kidney Disease
MeSH terms: Kidney Diseases; Renal Insufficiency, Chronic
Study type: Interventional

Summary: 
      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.
    

Detailed description: 
      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. Investigators expect adolescents to report significant improvements in all
      areas. Lastly, investigators 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, investigators 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.
    

Intervention name(s): My Kidney Guru
Intervention type(s): Other
Intervention description(s): My Kidney Guru is 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.
Intervention model: Single Group Assignment
Masking: None (Open Label)
Primary purpose: Supportive Care
Keywords: Chronic Kidney Disease; Disease Self-Management; Adolescent Health