Abstracts

Rationale: Transition from pediatric to adult health care system is challenging for many youth with epilepsy and their families. Recently, the Ministry of Health and Long Term Care of the Province of Ontario, Canada created a Transition working group (TWG) to develop recommendations for the transition process for patients with epilepsy in the Province of Ontario. Here we present an executive summary of this work. Methods: The TWG was composed by a multidisciplinary group of pediatric and adult epileptologists, psychiatrists and family doctors from academia and from the community; neurologists from the community; nurses and social workers from pediatric and adult epilepsy programs; adolescent medicine physician specialists; a team of physicians, nurses and social workers dedicated to patients with complex care needs; a lawyer; an occupational therapist, representatives from community epilepsy agencies; patients with epilepsy; parents of patients with epilepsy and severe intellectual disability, and project managers. There were 3 main areas addressed: 1) Diagnosis and Management of Seizures; 2) Mental Health and Psychosocial Needs; and 3) Financial, Community and Legal Supports. Results: Although there are no systematic studies on the outcomes of transition programs, the impressions of the TWG are as follows. Teenagers at risk of poor transition should be identified early. The care coordination between pediatric and adult neurologists and other specialists should begin before the actual transfer. The transition period is the ideal time to rethink the diagnosis and repeat diagnostic testing where indicated (particularly genetic testing, which now can uncover more etiologies than when patients were initially evaluated many years ago). Some screening tests should be repeated after the move to the adult system. Conclusions: The 7 steps proposed here may facilitate transition, thus promoting uninterrupted and adequate care for youth patients with epilepsy leaving the pediatric system.