Transition to adult care for patients with epilepsy

The transition of children and adolescents with epilepsy to the adult healthcare system presents many challenges. The disease is frequently accompanied by cognitive and developmental impairments that make it difficult to achieve self-management of the disease. Seizures are often associated with a loss of consciousness; therefore, conversations regarding medical history often take place only between the physician and the parents. The children and adolescents then usually have a very little knowledge about their disease and do not learn to talk about their seizures and other disease-related problems. Childhood epilepsies are partly caused by rare genetic diseases, and neurologists usually have little experience with these diseases. In the past many of these etiologies were underdiagnosed in pediatrics and never reclassified during adulthood. An improvement of this situation requires long-term assistance over numerous years for the young patients to learn more about their own disease and the healthcare structures for adults. They should also be trained in how to talk about their medical problems with the doctor (physician-patient communication). At the medical level, a well-structured transfer of clinical findings, EEGs, imaging findings, etiologies, the current seizure situation, and the history of therapeutic measures is required. This article provides useful recommendations and information about existing programs and materials to support the management of transition.