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

被引：86

作者：

Andrade, Danielle M. ^{[1
,2
]}

Bassett, Anne S. ^{[3
]}

Bercovici, Eduard ^{[4
]}

Borlot, Felippe ^{[5
]}

Bui, Esther ^{[4
]}

Camfield, Peter ^{[6
]}

Clozza, Guida Quaglia

Cohen, Eyal ^{[7
]}

Gofine, Timothy ^{[8
]}

Graves, Lisa

Greenaway, Jon ^{[9
]}

Guttman, Beverly ^{[10
]}

Guttman-Slater, Maya

Hassan, Ayman ^{[11
]}

Henze, Megan ^{[12
]}

Kaufman, Miriam ^{[13
]}

Lawless, Bernard ^{[14
]}

Lee, Hannah ^{[15
]}

Lindzon, Lezlee ^{[16
]}

Lomax, Lysa Boisse ^{[17
]}

McAndrews, Mary Pat ^{[18
]}

Menna-Dack, Dolly ^{[19
]}

Minassian, Berge A. ^{[20
,21
]}

Mulligan, Janice ^{[12
]}

Nabbout, Rima ^{[22
]}

Nejm, Tracy

Secco, Mary ^{[23
]}

Sellers, Laurene

Shapiro, Michelle ^{[24
]}

Slegr, Marie

Smith, Rosie ^{[25
]}

Szatmari, Peter ^{[26
]}

Tao, Leeping ^{[27
]}

Vogt, Anastasia ^{[28
]}

Whiting, Sharon ^{[29
]}

Snead, O. Carter, III ^{[20
]}

机构：

[1] Univ Toronto, Toronto Western Hosp, Div Neurol, Epilepsy Transit Program, Toronto, ON, Canada

[2] Univ Toronto, Toronto Western Hosp, Epilepsy Genet Program, Div Neurol, 5WW-445,399 Bathurst St, Toronto, ON M5T2S8, Canada

[3] Univ Toronto, Ctr Addict & Mental Hlth, Toronto, ON, Canada

[4] Univ Toronto, Toronto Western Hosp, Div Neurol, Toronto, ON, Canada

[5] Univ Utah, Sch Med, Dept Neurol, Clin Neurosci Ctr, Salt Lake City, UT USA

[6] Dalhousie Univ, Div Pediat Neurol, Halifax, NS, Canada

[7] Univ Toronto, Hosp Sick Children, Div Pediat Med, Toronto, ON, Canada

[8] Ontario Shores, Whitby, ON, Canada

[9] Erin Oak Kids Ctr Treatment & Dev, Toronto, ON, Canada

[10] Prov Council Maternal & Child Hlth, Toronto, ON, Canada

[11] Thunder Bay Reg Hlth Sci Ctr, Thunder Bay, ON, Canada

[12] Hosp Sick Children, Toronto, ON, Canada

[13] Univ Toronto, Hosp Sick Children, Dept Pediat, Div Adolescent Med, Toronto, ON, Canada

[14] St Michaels Hosp, Toronto, ON, Canada

[15] Holland Bloorview Kids Rehabil Hosp, Toronto, ON, Canada

[16] Toronto Western Hosp, Epilepsy Program, Toronto, ON, Canada

[17] Queens Univ, Kingston Gen Hosp, Div Neurol, Kingston, ON, Canada

[18] Univ Toronto, Toronto Western Hosp, Div Neuropsychol, Toronto, ON, Canada

[19] Holland Bloorview Kids Rehabil Hosp, LIFEspan Serv, Toronto, ON, Canada

[20] Univ Toronto, Hosp Sick Children, Div Pediat Neurol, Toronto, ON, Canada

[21] Univ Texas Southwestern & Dallas Childrens Med Ct, Pediat Neurol, Dallas, TX USA

[22] Hosp Necker Enfants Malades, Ctr Reference Epilepsies Rares, Paris, France

[23] Epilepsy Support Ctr, Strateg Initiat, London, ON, Canada

[24] McMaster Univ, Hamilton Hlth Sci Ctr, Div Neurol, Hamilton, ON, Canada

[25] Epilepsy Toronto, Adult Serv, Toronto, ON, Canada

[26] Univ Toronto, Hosp Sick Children, Child & Youth Mental Hlth Collaborat, Ctr Addict & Mental Hlth, Toronto, ON, Canada

[27] Surrey Pl Ctr, Toronto, ON, Canada

[28] Crit Care Serv, Toronto, ON, Canada

[29] Univ Ottawa, Childrens Hosp Eastern Ontario, Div Pediat Neurol, Ottawa, ON, Canada

来源：

EPILEPSIA | 2017年 / 58卷 / 09期

关键词：

Epilepsy; Transition; Teenager; Youth; Genetics; Discharge package; Transition readiness questionnaire; CHILDHOOD-ONSET EPILEPSY; SUDDEN UNEXPECTED DEATH; LONG-TERM PROGNOSIS; QUALITY-OF-LIFE; HEALTH-CARE; CONSENSUS STATEMENT; DEFICIENCY SYNDROME; KETOGENIC DIET; MOUSE MODEL; CHILDREN;

D O I：

10.1111/epi.13832

中图分类号：

R74 [神经病学与精神病学];

学科分类号：

摘要：

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.

引用

页码：1502 / 1517

页数：16

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