Pediatric Chronic Illness Transition Care

Fellowship Class 2012-2013


With the success of NICUs, childhood cancer treatment, and organ transplantation technology, a growing population of young people with complex chronic disease are now surviving into adulthood. It is estimated that they will soon comprise almost 10% of young adults, compared to approximately 1% of young adults prior to these advances in treating childhood diseases. When pediatric patients with complex disease transfer to adult care, the triple threat of serious disease, immature executive judgment, and loss of usual care sources cause surges in preventable disability, hospitalization, and healthcare spending.

CERC’s care redesign team found three addressable failure points in current methods to manage the transition of patients with complex chronic illness to adult care, summarized in the table below. Team members address these failure points via a new care model with three core elements: (1) for patients and their caregivers, development of the knowledge, beliefs, and skills to successfully self-manage their illness in a less nurturing adult care system; (2) provision of close support for a safe on-boarding in the adult care system; and (3) the establishment of tele-mediated connections between patients’ prior pediatric specialty providers and the patients’ new adult care providers, who are often unfamiliar with severe childhood-acquired illnesses. Providing a smooth transfer helps families avoid unnecessary worsening of disease (e.g. transplant organ rejection) and the concomitant costs associated with emergency room use and hospitalization.

Estimated savings

A conservative estimate of cost savings from national implementation of the CERC transitions model is $200 million dollars in direct health care spending per year. Annual savings are likely to grow as more and more children with complex chronic illness survive into adulthood.


Rachel Bensen, MD, Dana Steidtmann, PhD, Yana Vaks, MD, Terry Platchek, MD, Donna Zulman, MD, MS, Arnold Milstein, MD, MPH, 2013