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

NATIONAL INSTITUTE OF DIABETES AND DIGESTIVE AND KIDNEY DISEASES
ID: 1R43DK108421-01
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.

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DEB CHILDRESS, PHD

Chief of Research and Learning Content

BIOGRAPHY

Dr. Childress obtained her PhD in psychology at the University of North Carolina at Chapel Hill. Prior to coming to 3C Institute, she served as a research associate and a postdoctoral fellow in the Carolina Institute for Developmental Disabilities at the University of North Carolina at Chapel Hill working on a longitudinal imaging study aimed at identifying the early markers of autism through behavioral and imaging methodologies. She has 19 years of autism research experience, during which she has examined the behavioral, personality, and cognitive characteristics of individuals with autism and their family members. Dr. Childress also has experience developing behavioral and parent report measurement tools, coordinating multi-site research studies, and collecting data from children and families. She has taught courses and seminars in general child development, autism, and cognitive development at the University of North Carolina at Chapel Hill.

Expertise

  • autism
  • early development
  • behavioral measurement
  • integrating behavioral and biological measurement

Education

  • Postdoctoral fellowship, Carolina Institute for Developmental Disabilities (Institutional NRSA-NICHD), University of North Carolina at Chapel Hill
  • PhD, developmental psychology, University of North Carolina at Chapel Hill
  • BS, psychology (minor in sociology), University of Iowa

Selected Publications

  • Elison, J. T., Wolff, J. J., Heimer, D. C., Paterson, S. J., Gu, H., Hazlett, H. C., Styner, M, Gerig, G., & Piven, J. (in press). Frontolimbic neural circuitry at 6 months predicts individual differences in joint attention at 9 months. Developmental Science.
  • Wassink, T. H., Vieland, V. J., Sheffield, V. C., Bartlett, C. W., Goedken, R., Childress, D. & Piven, J. (2008). Posterior probability of linkage analysis of autism dataset identifies linkage to chromosome 16. Psychiatric Genetics,18(2),85-91.
  • Losh, M., Childress, D., Lam K. & Piven, J. (2008). Defining key features of the broad autism phenotype: A comparison across parents of multiple- and single-incidence autism families. American Journal of Medical Genetics (Neuropsychiatric Genetics), 147B(4):424-33.
  • Wassink, T. H., Piven, J., Vieland, V. J., Jenkins, L., Frantz R., Bartlett, C. W., Goedken, R., … Sheffield, V.C. (2005). Evaluation of the chromosome 2q37.3 gene CENTG2 as an autism susceptibility gene. American Journal of Medical Genetics (Neuropsychiatric Genetics), 136, 36-44.
  • Barrett, S., Beck, J., Bernier, R., Bisson, E., Braun, T., Casavant, T., Childress, D., … Vieland, V. (1999). An autosomal genomic screen for autism. American Journal of Medical Genetics (Neuropsychiatric Genetics), 88, 609-615. doi: 10.1002/(SICI)1096-8628(19991215)88:63.0.CO;2-L
  • Piven, J., Palmer, P., Landa, R., Santangelo, S., Jacobi, D. & Childress, D. (1997). Personality and language characteristics in parents from multiple-incidence autism families. American Journal of Medical Genetics (Neuropsychiatric Genetics), 74, 398-411.
  • Piven, J., Palmer, P., Jacobi, D., Childress, D. & Arndt, S. (1997). Broader autism phenotype: Evidence from a family history study of multiple-incidence autism families. American Journal of Psychiatry, 154, 185-190.