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Epilepsia. 2017 Sep;58(9):1502-1517. doi: 10.1111/epi.13832. Epub 2017 Jul 6.

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

Author information

1
Division of Neurology, Epilepsy Transition Program and Epilepsy Genetics Program, University of Toronto, Toronto Western Hospital, Toronto, Ontario, Canada.
2
Centre for Addiction and Mental Health, University of Toronto, Toronto, Ontario, Canada.
3
Division of Neurology, University of Toronto, Toronto Western Hospital, Toronto, Ontario, Canada.
4
Department of Neurology, Clinical Neurosciences Center University of Utah School of Medicine, Salt Lake City, Utah, U.S.A.
5
Division of Pediatric Neurology, Dalhousie University, Halifax, Nova Scotia, Canada.
6
Parent Representative, Toronto, Ontario, Canada.
7
Division of Pediatric Medicine, University of Toronto, The Hospital for Sick Children, Toronto, Ontario, Canada.
8
Ontario Shores, Whitby, Ontario, Canada.
9
Family Physician, Sudbury, Ontario, Canada.
10
Erin Oak Kids, Centre for Treatment and Development, Toronto, Ontario, Canada.
11
Provincial Council for Maternal and Child Health, Toronto, Ontario, Canada.
12
Patient Representative, Toronto, Ontario, Canada.
13
Thunder Bay Regional Health Sciences Centre, Thunder Bay, Ontario, Canada.
14
Hospital for Sick Children, Toronto, Ontario, Canada.
15
Division of Adolescent Medicine, Department of Pediatrics, University of Toronto, The Hospital for Sick Children, Toronto, Ontario, Canada.
16
St. Michael's Hospital, Toronto, Ontario, Canada.
17
Holland Bloorview Kids Rehabilitation Hospital, Toronto, Ontario, Canada.
18
Epilepsy Program, Toronto Western Hospital, Toronto, Ontario, Canada.
19
Division of Neurology, Queens University, Kingston General Hospital, Kingston, Ontario, Canada.
20
Division of Neuropsychology, University of Toronto, Toronto Western Hospital, Toronto, Ontario, Canada.
21
LIFEspan Service, Holland Bloorview Kids Rehabilitation Hospital, Toronto, Ontario, Canada.
22
Pediatric Epileptologist, Division of Pediatric Neurology, University of Toronto, The Hospital for Sick Children, Toronto, Ontario, Canada.
23
Pediatric Neurology, University of Texas Southwestern and Dallas Children's Medical Center, Dallas, Texas, U.S.A.
24
Pediatric Neurologist, Centre of Reference Epilepsies Rares, Hospital Necker-Enfants Malades, Paris, France.
25
Parent Representative, London, Ontario, Canada.
26
Strategic Initiatives, Epilepsy Support Centre, London, Ontario, Canada.
27
Family Physician, Toronto, Ontario, Canada.
28
Division of Neurology, McMaster University, Hamilton Health Sciences Centre, Hamilton, Ontario, Canada.
29
Neurologist, Toronto, Ontario, Canada.
30
Adult Services, Epilepsy Toronto, Toronto, Ontario, Canada.
31
Child and Youth Mental Health Collaborative, Centre for Addiction and Mental Health, Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada.
32
Surrey Place Centre, Toronto, Ontario, Canada.
33
Critical Care Services, Toronto, Ontario, Canada.
34
Division of Pediatric Neurology, University of Ottawa, Children's Hospital of Eastern Ontario, Ottawa, Ontario, Canada.
35
Division of Pediatric Neurology, University of Toronto, The Hospital for Sick Children, Toronto, Ontario, Canada.

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.

KEYWORDS:

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

PMID:
28681381
DOI:
10.1111/epi.13832
[Indexed for MEDLINE]
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