Strategies for transitioning to adult care for youth with Lennox-Gastaut syndrome and related disorders

Epilepsia. 2011 Aug;52 Suppl 5:21-7. doi: 10.1111/j.1528-1167.2011.03179.x.

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.

MeSH terms

  • Adolescent
  • Adult
  • Age Factors
  • Child
  • Continuity of Patient Care / organization & administration*
  • Humans
  • Intellectual Disability / drug therapy
  • Intellectual Disability / psychology
  • Intellectual Disability / therapy*
  • Lennox Gastaut Syndrome
  • Outcome Assessment, Health Care
  • Progressive Patient Care / organization & administration*
  • Social Adjustment
  • Spasms, Infantile / drug therapy
  • Spasms, Infantile / psychology
  • Spasms, Infantile / therapy*

Supplementary concepts

  • Epileptic encephalopathy, Lennox-Gastaut type