Driving a car, getting a job, managing money: increasing independence is a hallmark of the transition to adulthood. Most people remember these first steps into becoming an adult, but few remember the first time they made a medical appointment or managed taking multiple medicines. For adolescents who have a chronic medical condition such as chronic kidney disease (CKD), these self-management skills are essential for supporting their independence and maintaining their health.
What are self-management skills? They are the choices and behaviors people use to manage their health and improve outcomes. The importance of developing strategies and skills for self-management cannot be overstated. For teens and young adults who struggle to balance the demands of school, peer relationships, and self-discovery, managing a chronic health condition is not always a top priority—especially if they do not feel symptoms, which is common in CKD. Historically, treatment adherence in teens and adolescents is low. For youth who have CKD, nonadherence can have devastating consequences, notably renal failure or kidney transplant rejection.
My Kidney Guide
3C Institute has a solution to low adherence: My Kidney Guide, a self-paced e-learning program designed specifically for teens and young adults with CKD (including youth with End-Stage Renal Disease). The program teaches teens and young adults self-management skills and strategies that prepare them for the transition from pediatric to adult health care and for the responsibility of making their own health decisions. Our team is a multidisciplinary collaboration among experts in pediatric nephrology, pediatric health care transitions, pediatric and adolescent mental health, and technology-based behavior change interventions.
For programs to work effectively, they must get input from the people who will use them. To that end, we are partnering with teens and young adults to find out what skills they need to manage their medical health. We are also talking to parents, many of whom need more support with guiding their children’s development of self-management skills and with letting go of the responsibility of overseeing their children’s health decisions. My Kidney Guide offers something for the whole family.
Through those conversations, consultations with the health care workers serving youth with CKD, and an in-depth review of current research, we have identified several key areas to address. These areas include coping, self-management and self-advocacy, medicines and medical appointments, and planning for the future—all of which address the practical, social, and emotional aspects of life with CKD. But our work doesn’t stop there. As we develop program content, we discuss it with teens and their parents to determine its usefulness.
My Kidney Guide integrates self-management skills, self-awareness components, and developmentally appropriate information about CKD in an engaging e-learning program. My Kidney Guide also includes a module for parents that provides a roadmap for building these skills in children. For youth with CKD, maintaining their health is a lifelong process, making effective strategies to increase treatment adherence not only valuable but also vital.
What Can I Do Today?
If you are a youth with CKD, a parent of a youth with CKD, or a health care provider, and you would like to get involved in the ongoing research and development of My Kidney Guide, contact Dr. Deb Childress today!
Deb Childress, PhD, Suzanne Messina, MA, and Edie Lindley are part of the My Kidney Guide research and development team at 3C Institute. Maria E. Diaz-Gonzalez de Ferris, MD, MPH, PhD, is a professor of general pediatrics and adolescent medicine at the UNC School of Medicine. My Kidney Guide is funded in part by a SBIR Phase II award from National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK).