Epilepsy: Transition from pediatric to adult care. Recommendations of the Ontario epilepsy implementation task force

Danielle M. Andrade, Anne S. Bassett, Eduard Bercovici, Felippe Borlot, Esther Bui, Peter Camfield, Guida Quaglia Clozza, Eyal Cohen, Timothy Gofine, Lisa Graves, Jon Greenaway, Beverly Guttman, Maya Guttman-Slater, Ayman Hassan, Megan Henze, Miriam Kaufman, Bernard Lawless, Hannah Lee, Lezlee Lindzon, Lysa Boissé LomaxMary Pat McAndrews, Dolly Menna-Dack, Berge A. Minassian, Janice Mulligan, Rima Nabbout, Tracy Nejm, Mary Secco, Laurene Sellers, Michelle Shapiro, Marie Slegr, Rosie Smith, Peter Szatmari, Leeping Tao, Anastasia Vogt, Sharon Whiting, O. Carter Snead

Research output: Contribution to journalReview article

17 Citations (Scopus)

Abstract

The transition from a pediatric to adult health care system is challenging for many youths 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. Herein we present an executive summary of this work. The TWG was composed of 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. Three main areas were addressed: (1) Diagnosis and Management of Seizures; 2) Mental Health and Psychosocial Needs; and 3) Financial, Community, and Legal Supports. 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. The seven steps proposed herein may facilitate transition, thereby promoting uninterrupted and adequate care for youth with epilepsy leaving the pediatric system.

Original languageEnglish (US)
Pages (from-to)1502-1517
Number of pages16
JournalEpilepsia
Volume58
Issue number9
DOIs
StatePublished - Sep 1 2017

Fingerprint

Transition to Adult Care
Ontario
Advisory Committees
Epilepsy
Pediatrics
Nurses
Adolescent Medicine
Physicians
Patient Transfer
Lawyers
Genetic Testing
Long-Term Care
Intellectual Disability
Canada
Psychiatry
Mental Health
Seizures
Parents
Outcome Assessment (Health Care)
Delivery of Health Care

Keywords

  • Discharge package
  • Epilepsy
  • Genetics
  • Teenager
  • Transition
  • Transition readiness questionnaire
  • Youth

ASJC Scopus subject areas

  • Neurology
  • Clinical Neurology

Cite this

Andrade, D. M., Bassett, A. S., Bercovici, E., Borlot, F., Bui, E., Camfield, P., ... Carter Snead, O. (2017). Epilepsy: Transition from pediatric to adult care. Recommendations of the Ontario epilepsy implementation task force. Epilepsia, 58(9), 1502-1517. https://doi.org/10.1111/epi.13832

Epilepsy : Transition from pediatric to adult care. Recommendations of the Ontario epilepsy implementation task force. / Andrade, Danielle M.; Bassett, Anne S.; Bercovici, Eduard; Borlot, Felippe; Bui, Esther; Camfield, Peter; Clozza, Guida Quaglia; Cohen, Eyal; Gofine, Timothy; Graves, Lisa; Greenaway, Jon; Guttman, Beverly; Guttman-Slater, Maya; Hassan, Ayman; Henze, Megan; Kaufman, Miriam; Lawless, Bernard; Lee, Hannah; Lindzon, Lezlee; Lomax, Lysa Boissé; McAndrews, Mary Pat; Menna-Dack, Dolly; Minassian, Berge A.; Mulligan, Janice; Nabbout, Rima; Nejm, Tracy; Secco, Mary; Sellers, Laurene; Shapiro, Michelle; Slegr, Marie; Smith, Rosie; Szatmari, Peter; Tao, Leeping; Vogt, Anastasia; Whiting, Sharon; Carter Snead, O.

In: Epilepsia, Vol. 58, No. 9, 01.09.2017, p. 1502-1517.

Research output: Contribution to journalReview article

Andrade, DM, Bassett, AS, Bercovici, E, Borlot, F, Bui, E, Camfield, P, Clozza, GQ, Cohen, E, Gofine, T, Graves, L, Greenaway, J, Guttman, B, Guttman-Slater, M, Hassan, A, Henze, M, Kaufman, M, Lawless, B, Lee, H, Lindzon, L, Lomax, LB, McAndrews, MP, Menna-Dack, D, Minassian, BA, Mulligan, J, Nabbout, R, Nejm, T, Secco, M, Sellers, L, Shapiro, M, Slegr, M, Smith, R, Szatmari, P, Tao, L, Vogt, A, Whiting, S & Carter Snead, O 2017, 'Epilepsy: Transition from pediatric to adult care. Recommendations of the Ontario epilepsy implementation task force', Epilepsia, vol. 58, no. 9, pp. 1502-1517. https://doi.org/10.1111/epi.13832
Andrade, Danielle M. ; Bassett, Anne S. ; Bercovici, Eduard ; Borlot, Felippe ; Bui, Esther ; Camfield, Peter ; Clozza, Guida Quaglia ; Cohen, Eyal ; Gofine, Timothy ; Graves, Lisa ; Greenaway, Jon ; Guttman, Beverly ; Guttman-Slater, Maya ; Hassan, Ayman ; Henze, Megan ; Kaufman, Miriam ; Lawless, Bernard ; Lee, Hannah ; Lindzon, Lezlee ; Lomax, Lysa Boissé ; McAndrews, Mary Pat ; Menna-Dack, Dolly ; Minassian, Berge A. ; Mulligan, Janice ; Nabbout, Rima ; Nejm, Tracy ; Secco, Mary ; Sellers, Laurene ; Shapiro, Michelle ; Slegr, Marie ; Smith, Rosie ; Szatmari, Peter ; Tao, Leeping ; Vogt, Anastasia ; Whiting, Sharon ; Carter Snead, O. / Epilepsy : Transition from pediatric to adult care. Recommendations of the Ontario epilepsy implementation task force. In: Epilepsia. 2017 ; Vol. 58, No. 9. pp. 1502-1517.
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