Abstracts

Rationale: The smooth transition of adolescents with epilepsy from neuropediatrics into the adult health system presents a major challenge. The transition process should start early, with the aim that adolescents increasingly take responsibility for their illness in order to be self-reliant upon reaching adulthood. Transition of patients with disabilities and special needs (e.g. cognitive limitations) is especially demanding, and their need for autonomy must also be taken seriously.Age-related lifestyle changes and milestones associated with entry into adult life can be problematic for young patients with epilepsy. Patients are often unable to manage their disease alone and their parents are reluctant to leave the long-term, triangular relationship between themselves, their child and the pediatrician. For patients with special needs, certain care requirements often make transition particularly difficult, since similar services are often scarce and / or difficult to access in the adult healthcare system.  Methods: Two meetings were held to develop materials and recommendations to optimize the transition process for patients in Germany. These consist of guidelines and checklists, separated into four modules: the preparation of adolescents, preparation for parents, information transfer between doctors, and special appointments to tackle transition. Results: Checklists for patients with or without special needs have been drawn up to help patients summarize the most important information (seizure triggers, medication history, etc.) and prepare them to be self-reliant. Parents also need to be prepared, as their role as the contact partners diminishes. The second module consists of materials for them.Communication between the neuropediatrician and neurologist is crucial for a successful transition. A standardized transfer letter template has been produced, in which all relevant disease and therapy information is summarized, as well as a checklist for the pediatrician.The last module includes guidelines for discussions with adolescents and their parents. Adolescents should be invited to a consultation without their parents, in which the paediatrician should use clear and simple language, and a subsequent conversation involving the parents will serve to gain additional information. For patients with special needs, the parents should be more fully involved and, if necessary, the transition to a specialized care centre should be organised. Conclusions: The dissemination and adoption of these materials will have significant impact on the transition process, especially for patients who are not treated in specialized epilepsy centres. After a trial phase, feedback will be obtained and the materials revised if necessary. Initial feedback will be included here. Funding: The ESLi-Trans Group was funded by Bial Deutschland GmbH.