TY - JOUR
T1 - How can transition to adult care be best orchestrated for adolescents with epilepsy?
AU - Camfield, Peter R.
AU - Andrade, Danielle
AU - Camfield, Carole S.
AU - Carrizosa-Moog, Jaime
AU - Appleton, Richard
AU - Baulac, Michel
AU - Brown, Lawrence
AU - Menachem, Eleonor Ben
AU - Cross, Helen
AU - Desguerre, Isabelle
AU - Grant, Christina
AU - Hosny, Hassan
AU - Jurasek, Laura
AU - Mula, Marco
AU - Pfäfflin, Margarete
AU - Rheims, Sylvain
AU - Ring, Howard
AU - Shellhaas, Renée A.
AU - Vinayan, K. P.
AU - Wirrell, Elaine
AU - Nabbout, Rima
N1 - Publisher Copyright:
© 2019 Elsevier Inc.
PY - 2019/4
Y1 - 2019/4
N2 - 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.
AB - 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.
KW - Adolescent
KW - Epilepsy
KW - Intellectual disability
KW - Transition
KW - Transition programs
UR - http://www.scopus.com/inward/record.url?scp=85059816367&partnerID=8YFLogxK
U2 - 10.1016/j.yebeh.2018.12.015
DO - 10.1016/j.yebeh.2018.12.015
M3 - Review article
C2 - 30926274
AN - SCOPUS:85059816367
SN - 1525-5050
VL - 93
SP - 138
EP - 147
JO - Epilepsy and Behavior
JF - Epilepsy and Behavior
ER -