Being a patient with a chronic medical condition is a tough thing to face alone. Children with chronic medical conditions, like heart defects, spend their young lives in the hands of their parents and pediatricians. They get the care they need, but it’s negotiated by others. As these young patients transition into adulthood, getting that same level of care themselves isn’t always so simple—especially considering how complicated specialty care can be. Transitioning patients sometimes slip through the cracks or worse. They face abrupt transitions to adult-focused hospitals and treatment plans. Without guidance, a patient’s attempts to manage care can independently result in serious lapses or setbacks in treatment.
Young patients with chronic medical conditions should have access to a specific training program to smooth the transition. The program could cover the condition’s progression as well as chronic patient-basics like making appointments, getting medications, understanding preventive care appointments, and routine care, as well as learning to deal with emergencies. The goal would be to make the leap from pediatric to adult care more seamless and effective.
The training program would include assigned transition navigators to serve as the point person for patients, families, and doctors (including pediatrics, specialty, and adult-focused care). These navigators would run simulations with transitioning patients, including how drinking alcohol might affect a condition as a patient moves to college, or how to budget for the burden of long term treatment. The goal is to support young patients as they find their footing in a brand new system of care.