Abstracts

Rationale: When children with epilepsy reach late adolescence, transition to an appropriate service for adults is often problematic. Frequently transfer is abrupt or there is inappropriate retention in pediatrics. A significant number become disconnected (“lost”) from health care all together. Current evidence suggests that transition clinics improve quality of health care in chronic diseases starting in childhood, prevent comorbidity and long-term costs and reduce Disability-Adjusted-Life-Years. We describe an algorithm for transition of youth with epilepsy to adult care. Methods: 2 pediatric, 1 adult epileptologist and the adult epilepsy program coordinator developed a transition clinic for youth with epilepsy. The goal was to gradually empower the individual child to become knowledgeable about epilepsy, self-sufficient and independent, able to problem solve and access needed knowledge or resources and hopefully avoid stigmatisation, social isolation and failure in occupational issues. A Shared Management Approach served as a model to gradually hand over responsibilities from the health care provider and family members to the patient. Based on the first 26 patients, we developed a 10-step-algorithm. Results: The 10 steps are: (1) Identification of patients ready for transition; (2) Preparation of patient and family for transition by the pediatric team; (3) Completion of a structured medical synopsis form including details of the epilepsy and treatment, proposed cause and investigations and associated problems; (4a) Documentation of “social” information using a structured format completed by the caretaker of a handicapped individual including comorbid physical, cognitive and behavioural difficulties; custody and financial support, names and locations of health, educational and social services involved; medications, vitamins and alternative therapies, social network and recreation; and nutritional status; (4b) If the individual was normally intelligent, a detailed form was completed by the patient which includes an outline of education and employment, driving status, medications, vitamins and alternative therapies, marital status, extracurricular activities; (5) 3 and 4 forwarded from the pediatric to adult service; (6) Joint appointment at the adult hospital including patient, family, pediatric neurologists, adult epileptologist and epilepsy nurse to introduce the adult service; (7) Review of history and examination by the adult team; (8) Formulation of short and long-term plans with special focus on health care providers (epileptologist, neurologist, family physician, medical support services); (9) Review with the entire group including patient and family to agree on diagnostic and therapeutic steps (medical and social) and follow up visits; (10) Summary letter to family physician and adult hospital health record. Conclusions: Our algorithm has been successful for the complex process of coordination, collaboration, and communication amongst youth, families, health care providers and services. Further research is needed to objectively document its value.