Rare and Complex Epilepsies from Childhood to Adulthood: Requirements for Separate Management or Scope for a Lifespan Holistic Approach?
Epileptic encephalopathy
Lifespan clinics
Precision medicine
Rare syndrome
Transition
Journal
Current neurology and neuroscience reports
ISSN: 1534-6293
Titre abrégé: Curr Neurol Neurosci Rep
Pays: United States
ID NLM: 100931790
Informations de publication
Date de publication:
24 11 2021
24 11 2021
Historique:
accepted:
28
09
2021
entrez:
24
11
2021
pubmed:
25
11
2021
medline:
15
12
2021
Statut:
epublish
Résumé
In this descriptive review, we describe current models of transition in rare and complex epilepsy syndromes and propose alternative approaches for more holistic management based on disease biology. Previously published guidance and recommendations on transition strategies in individuals with epilepsy have not been systematically and uniformly applied. There is significant heterogeneity in models of transition/transfer of care across countries and even within the same country. We provide examples of the most severe epilepsy and related syndromes and emphasise the limited data on their outcome in adulthood. Rare and complex epilepsy syndromes have unique presentations and require high levels of expertise and multidisciplinary approach. Lifespan clinics, with no transition, but instead continuity of care from childhood to adulthood with highly specialised input from healthcare providers, may represent an alternative effective approach. Effectiveness should be measured by evaluation of quality of life for both patients and their families/caregivers.
Identifiants
pubmed: 34817708
doi: 10.1007/s11910-021-01154-7
pii: 10.1007/s11910-021-01154-7
pmc: PMC8613076
doi:
Types de publication
Journal Article
Research Support, Non-U.S. Gov't
Review
Langues
eng
Sous-ensembles de citation
IM
Pagination
65Informations de copyright
© 2021. The Author(s).
Références
Curr Pharm Des. 2017;23(37):5667-5690
pubmed: 28799511
Epilepsia. 2007 Jun;48(6):1128-32
pubmed: 17442010
Epilepsia. 2011 Aug;52 Suppl 5:10-20
pubmed: 21790561
Epilepsia. 2009 May;50 Suppl 5:49-51
pubmed: 19469847
Epilepsia. 2021 Mar;62 Suppl 2:S90-S105
pubmed: 32776321
Epilepsia. 2014 Aug;55 Suppl 3:46-51
pubmed: 25209087
Epilepsy Curr. 2012 Jul;12(Suppl 3):13-21
pubmed: 23476118
Epilepsy Behav. 2013 Oct;29(1):161-5
pubmed: 23973640
Epilepsy Behav. 2017 Apr;69:170-176
pubmed: 28089368
Epilepsia. 2010 Oct;51(10):2023-32
pubmed: 20477851
Epilepsia. 2009 Jun;50(6):1517-24
pubmed: 19054417
J Adolesc Health. 2015 Jun;56(6):612-8
pubmed: 26003575
Epilepsy Behav. 2018 Jun;83:13-21
pubmed: 29631156
Epilepsy Behav Case Rep. 2016 Feb 11;5:38-43
pubmed: 26977407
Epilepsia. 1996 Apr;37(4):367-72
pubmed: 8603642
Elife. 2017 Sep 12;6:
pubmed: 28893375
J Adolesc Health. 2003 Oct;33(4):309-11
pubmed: 14519573
Epileptic Disord. 2011 May;13 Suppl 1:S15-26
pubmed: 21669559
Public Health Genomics. 2012;15(1):34-45
pubmed: 21734357
Ann Neurol. 2019 Dec;86(6):821-831
pubmed: 31618474
Epilepsy Behav. 2020 Aug;109:107096
pubmed: 32422576
J R Soc Med. 2001 Oct;94(10):554
pubmed: 11581364
Semin Pediatr Neurol. 2017 Nov;24(4):264-275
pubmed: 29249506
Epilepsia. 2014 Aug;55 Suppl 3:54-5
pubmed: 25209089
Epilepsia. 1995 Oct;36(10):1017-24
pubmed: 7555952
Ann Neurol. 2018 Apr;83(4):703-717
pubmed: 29466837
Pediatr Neurol. 2012 Sep;47(3):153-61
pubmed: 22883278
Epilepsia. 2014 Apr;55(4):528-38
pubmed: 24502503
Epilepsy Behav. 2017 Apr;69:153-160
pubmed: 28188045
Adolesc Health Med Ther. 2016 Jun 27;7:77-87
pubmed: 27390536
Nat Rev Neurol. 2016 Aug;12(8):465-76
pubmed: 27448186
Epilepsia. 2005 Apr;46(4):568-72
pubmed: 15816952
Neurology. 2018 Jan 2;90(1):e67-e72
pubmed: 29196578
Pract Neurol. 2017 Jun;17(3):207-211
pubmed: 28119378
Brain. 2011 Oct;134(Pt 10):2982-3010
pubmed: 21719429
Epilepsy Behav. 2017 Apr;69:161-169
pubmed: 28256379
Epilepsia. 2020 Feb;61(2):249-258
pubmed: 31957018
Epilepsy Behav. 2020 Nov;112:107324
pubmed: 32721873
Lancet Respir Med. 2020 Jan;8(1):65-124
pubmed: 31570318
Lancet Neurol. 2009 Jan;8(1):82-93
pubmed: 19081517
Paediatr Child Health. 2007 Nov;12(9):785-93
pubmed: 19030468
Epilepsy Behav. 2019 Jul;96:23-27
pubmed: 31077938
Epilepsia. 2014 Aug;55 Suppl 3:16-20
pubmed: 25209080
Epilepsy Behav. 2020 Mar;104(Pt A):106889
pubmed: 32028125
Dev Med Child Neurol. 2008 Nov;50(11):859-63
pubmed: 19046179
Am J Hematol. 2017 Jun;92(6):487-489
pubmed: 28211097
Pediatrics. 2018 Nov;142(5):
pubmed: 30348754
Epilepsy Res Treat. 2013;2013:743203
pubmed: 24024028
J Neurosci Nurs. 2010 Aug;42(4):181-9
pubmed: 20804112
Pract Neurol. 2020 Oct 17;:
pubmed: 33070112
Epilepsia. 2015 Jun;56(6):856-63
pubmed: 25944453
Epilepsia. 1989 Jul-Aug;30(4):389-99
pubmed: 2502382
Patient Educ Couns. 2017 Jan;100(1):76-92
pubmed: 27693084
Ann Neurol. 2021 Feb;89(2):304-314
pubmed: 33180985
Epilepsia. 2019 Dec;60 Suppl 3:S49-S58
pubmed: 31904122
Epilepsia. 2003 Nov;44(11):1434-40
pubmed: 14636352
J Fam Nurs. 2015 Aug;21(3):362-412
pubmed: 26283056
Epilepsy Res. 2016 Dec;128:43-47
pubmed: 27810515
Orphanet J Rare Dis. 2019 Apr 30;14(1):91
pubmed: 31039793
Epilepsia. 2017 Sep;58(9):1502-1517
pubmed: 28681381
Epilepsia. 2014 Aug;55 Suppl 3:8-11
pubmed: 25209078
Eur J Med Genet. 2019 Sep;62(9):103555
pubmed: 30359776
J Med Genet. 2004 Oct;41(10):736-42
pubmed: 15466006
Pediatr Neurol. 2013 Oct;49(4):255-65
pubmed: 24053983
Epilepsy Res. 2015 Feb;110:10-9
pubmed: 25616450
Brain Dev. 2009 Jan;31(1):58-63
pubmed: 18930363
Clin Neurophysiol. 2000 Sep;111 Suppl 2:S94-S102
pubmed: 10996561
Acta Paediatr. 2017 Aug;106(8):1354-1357
pubmed: 28471516
Epilepsia. 2010 Jun;51(6):1043-52
pubmed: 20041943
J Child Health Care. 2021 Jun;25(2):305-319
pubmed: 32602355
Exp Neurol. 2017 Jul;293:159-171
pubmed: 28373025
Epilepsia. 2011 Apr;52 Suppl 2:44-9
pubmed: 21463279