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.
