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: 1R43DK108421-02
PI: DEBRA CHILDRESS, MARIA FERRIS
TERM: 09/18 – 07/22

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.

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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.