How can transition to adult care be best orchestrated for adolescents with epilepsy?

Peter R. Camfield, Danielle Andrade, Carole S. Camfield, Jaime Carrizosa-Moog, Richard Appleton, Michel Baulac, Lawrence Brown, Eleonor Ben Menachem, Helen Cross, Isabelle Desguerre, Christina Grant, Hassan Hosny, Laura Jurasek, Marco Mula, Margarete Pfäfflin, Sylvain Rheims, Howard Ring, Renée A. Shellhaas, K. P. Vinayan, Elaine WirrellRima Nabbout

Research output: Contribution to journalReview article

5 Scopus citations

Abstract

Objective evidence is limited for the value of transition programs for youth with chronic illness moving from pediatric to adult care; however, such programs intuitively “make sense”. We describe the strengths and weaknesses of a variety of transition programs from around the world for adolescents with epilepsy. Consequences of poorly organized transition beyond suboptimal seizure control may include an increased risk of sudden unexpected death in epilepsy (SUDEP), poor psychological and social outcome, and inadequate management of comorbidities. The content of transition programs for those with normal intelligence differs from those with intellectual disability, but both groups may benefit from an emphasis on sporting activities. Concerns that may interfere with optimal transition include lack of nursing or social work services, limited numbers of adult neurologists/epileptologists confident in the treatment of complex pediatric epilepsy problems, institutional financial support, and time constraints for pediatric and adult physicians who treat epilepsy and the provision of multidisciplinary care. Successful programs eventually need to rely on a several adult physicians, nurses, and other key healthcare providers and use novel approaches to complex care. More research is needed to document the value and effectiveness of transition programs for youth with epilepsy to persuade institutions and healthcare professionals to support these ventures.

Original languageEnglish (US)
Pages (from-to)138-147
Number of pages10
JournalEpilepsy and Behavior
Volume93
DOIs
StatePublished - Apr 2019

Keywords

  • Adolescent
  • Epilepsy
  • Intellectual disability
  • Transition
  • Transition programs

ASJC Scopus subject areas

  • Neurology
  • Clinical Neurology
  • Behavioral Neuroscience

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  • Cite this

    Camfield, P. R., Andrade, D., Camfield, C. S., Carrizosa-Moog, J., Appleton, R., Baulac, M., Brown, L., Menachem, E. B., Cross, H., Desguerre, I., Grant, C., Hosny, H., Jurasek, L., Mula, M., Pfäfflin, M., Rheims, S., Ring, H., Shellhaas, R. A., Vinayan, K. P., ... Nabbout, R. (2019). How can transition to adult care be best orchestrated for adolescents with epilepsy? Epilepsy and Behavior, 93, 138-147. https://doi.org/10.1016/j.yebeh.2018.12.015