NATIONAL INSTITUTE OF DIABETES AND DIGESTIVE AND KIDNEY DISEASES
PI: DEBRA CHILDRESS, MARIA FERRIS
TERM: 08/16 – 01/17
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% 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 included 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 My Kidney Guru program directly addresses 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 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.