Providers partner to ease transition from pediatric to adult care for chronically ill children
Ten to 20 million children and adolescents suffer from a chronic illness that can last a lifetime. For these children and their families, going to the doctor is a way of life. When chronically ill adolescents reach adulthood, usually age 18 to 21, they begin to transition from a pediatrician to an adult physician. According to Simona Nativ, MD, a pediatric rheumatologist for Atlantic Medical Group, the goal of transitioning is “to help maturing children or adolescents become confident young adults who are able to understand their disease, advocate for themselves, and have the ability to streamline their care from the pediatric to adult world.”
Dr. Nativ says transitioning care can be a complex process. “It involves coordination between the patient, the pediatrician, the pediatric subspecialist, the adult primary care physician and adult subspecialist. It’s constantly preparing and educating the patient about things they need to manage in the adult world.”
Some of the issues that need to be addressed include insurance benefits, prescriptions, making doctor visit appointments, and knowing what to do in an emergency. In addition to logistical matters, patients should be prepared for a different approach to their medical care. “Pediatric and adult medicine are different from one another and, therefore, it is important to transition both primary and specialty physicians in patients with chronic illness,” says Dr. Nativ. “For instance, the pediatric rheumatologist is in charge of seeing these patients more frequently than the pediatrician and handles some of the more general medical issues as well as manages the condition. In the adult world, the paradigm is much different. It’s more the internist or family practitioner stepping in to make sure that all the different subspecialty needs are being met.”
To help patients make the move, an electronic medical record-based tool, developed at the Baylor College of Medicine, allows the physician, patient and family to track the patient’s level of readiness to manage their chronic condition. The tool is designed to be used over a several-year period and assesses children’s responses to transition readiness questions.
Once a determination has been made that the child is ready to transition, Dr. Nativ says there is a process for moving the patient. “In pediatric rheumatology, we have chosen specific dates where we do a physical handoff to the adult specialists. We have partnered with adult rheumatology and continue to work with them closely to provide the best care for these patients.” Dr. Nativ says the ultimate goal of the transition process is to prevent morbidity and mortality of the patient. “This is the most vulnerable time in any chronic illness. Patients should not be lost to care, lose access to medications and potentially have flares with negative outcomes.”