Addressing Barriers to Transitioning Pediatric Patients With Epilepsy to Adult Health Care in the United States: A...

Adolescents with childhood-onset epilepsy, along with their families, must navigate a complex constellation of uncertainties related to physical, psychological, and social changes as well as medical and possibly legal ramifications as they approach adulthood. Transferring from the familiar pediatric setting to the adult health care system can be a time of concern because of actual and/or perceived differences between the settings (e.g., uncertainty about the patient entering a completely new system, providers focused on adults rather than children, patient behavior in a new environment, and less parental involvement). These concerns can be eased by a focused transition program, with clinicians providing a guiding hand for a smooth transfer into adult health care.

Models of transition processes involving epilepsy education, assessment of readiness for transfer, and validation of patient preparedness for self-management, when possible, are available in toolkits and publications. These resources address the need for focused transition care for patients with epilepsy; however, practical suggestions that clearly discuss barriers to transition in the US fee-for-service health care system, and strategies for addressing those barriers, are lacking.

In this study, we discuss features of transition programs for patients with epilepsy outside the United States and for patients in the United States with other disease conditions. We then detail the barriers to transition for patients with epilepsy in the United States, compiling them into categories with tables for quick and clear access. Along with the barriers, we provide clinicians treating adolescent patients with epilepsy with resources from which they can select the appropriate features best suited for addressing their institution's needs as well as the needs of patients, including those with complex epilepsies, such as developmental and epileptic encephalopathies.