title: Strategies for transitioning to adult care for youth with Lennox-Gastaut syndrome and related disorders.
abstract: Transition is the process of preparing children with chronic illness and their families for the adult health care system. In patients with Lennox-Gastaut syndrome (LGS) and related disorders, the process of transition is complicated by the presence of intellectual handicap, treatment-resistant epilepsy, and behavioral issues. Patients who are not successfully transitioned to adult care may end up without specialty care, may not receive satisfactory adult services, may lack adequate follow-up and access to newer therapies, and may lack appropriate management of comorbid conditions. Several family related and clinician-related barriers can inhibit the transition process. Transition strategies that maximize each patient's ability to achieve his or her potential and optimize self-sufficiency may lead to better social outcomes. Adolescent clinics that include members of the pediatric and adult neurology teams may help ensure a smooth transition to adult care, although studies are needed to objectively establish the best model. Results are reported from a survey of 133 symposium attendees on the topic of practice characteristics and issues related to transitioning care. Results suggested a great deal of dissatisfaction about the process of transition, especially for patients with intellectual handicap. We provide suggestions for developing a transition program, including identifying a willing adult service, adapting a multidisciplinary approach, addressing legal and psychosocial issues, and celebrating rites of passage.
authors.affiliation: Division of Neurology, Department of Pediatrics, Dalhousie University and the IWK Health Centre, 5850/5980 University Ave., Halifax, Nova Scotia, Canada. camfield@dal.ca
authors.forename: Peter R
authors.initials: PR
authors.lastname: Camfield
authors.forename: Patricia A
authors.initials: PA
authors.lastname: Gibson
authors.forename: Laurie M
authors.initials: LM
authors.lastname: Douglass
mesh_terms: D000293:Adolescent; D000328:Adult; D000367:Age Factors; D002648:Child; D003266:Continuity of Patient Care / Q000458:organization & administration*; D006801:Humans; D008607:Intellectual Disability / Q000188:drug therapy / Q000523:psychology / Q000628:therapy*; D065768:Lennox Gastaut Syndrome; D017063:Outcome Assessment, Health Care; D011383:Progressive Patient Care / Q000458:organization & administration*; D012917:Social Adjustment; D013036:Spasms, Infantile / Q000188:drug therapy / Q000523:psychology / Q000628:therapy*