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

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 year survival rate for adolescent onset ESRD is andgt 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 and 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 month SBIR Phase I project includes three specific aims develop the My Kidney Guru prototype 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 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 PUBLIC HEALTH RELEVANCE Disease knowledge 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 Increasing disease and treatment related knowledge is an essential component of any intervention to improve treatment adherence and support the successful transition to adult self management In response to this problem this SBIR project aims to develop a web accessible dynamic education and self management program designed specifically to meet the needs of adolescents with CKD