title: Priorities in pediatric epilepsy research: improving children's futures today.
abstract: The Priorities in Pediatric Epilepsy Research workshop was held in the spirit of patient-centered and patient-driven mandates for developing best practices in care, particularly for epilepsy beginning under age 3 years. The workshop brought together parents, representatives of voluntary advocacy organizations, physicians, allied health professionals, researchers, and administrators to identify priority areas for pediatric epilepsy care and research including implementation and testing of interventions designed to improve care processes and outcomes. Priorities highlighted were 1) patient outcomes, especially seizure control but also behavioral, academic, and social functioning; 2) early and accurate diagnosis and optimal treatment; 3) role and involvement of parents (communication and shared decision-making); and 4) integration of school and community organizations with epilepsy care delivery. Key factors influencing pediatric epilepsy care included the child's impairments and seizure presentation, parents, providers, the health care system, and community systems. Care was represented as a sequential process from initial onset of seizures to referral for comprehensive evaluation when needed. We considered an alternative model in which comprehensive care would be utilized from onset, proactively, rather than reactively after pharmacoresistance became obvious. Barriers, including limited levels of evidence about many aspects of diagnosis and management, access to care--particularly epilepsy specialty and behavioral health care--and implementation, were identified. Progress hinges on coordinated research efforts that systematically address gaps in knowledge and overcoming barriers to access and implementation. The stakes are considerable, and the potential benefits for reduced burden of refractory epilepsy and lifelong disabilities may be enormous.
authors: From the Ann & Robert H. Lurie Children's Hospital of Chicago (A.T.B.), Epilepsy Center, and Northwestern Memorial Feinberg School of Medicine, Department of Pediatrics, Chicago, IL; Department of Neurology (C.B.B., B.G.V.), University of California Los Angeles; Department of Neurology (C.B.B., B.G.V.), VA Greater Los Angeles Health Care System, Los Angeles, CA; Division of Epilepsy and Clinical Neurophysiology (T.L.), Department of Neurology, Boston Children's Hospital, Harvard Medical School, Boston, MA; and Pediatric Regional Epilepsy Program (D.D.), The Children's Hospital of Philadelphia, Departments of Neurology and Pediatrics, Perelman School of Medicine at the University of Pennsylvania, Philadelphia.
authors: Anne T
authors: AT
authors: Berg
authors: Christine B
authors: CB
authors: Baca
authors: Tobias
authors: T
authors: Loddenkemper
authors: Barbara G
authors: BG
authors: Vickrey
authors: Dennis
authors: D
authors: Dlugos
mesh_terms: D035843:Biomedical Research; D002675:Child, Preschool; D003695:Delivery of Health Care; D002658:Developmental Disabilities / Q000175:diagnosis / Q000517:prevention & control*; D004827:Epilepsy / Q000175:diagnosis* / Q000628:therapy*; D005190:Family / Q000523:psychology; D006801:Humans; D019359:Knowledge; D010372:Pediatrics
references: J Child Neurol. 2012 Oct;27(10):1289-94
references: 22914371
references: Epilepsia. 2010 Nov;51(11):2322-33
references: 20561026
references: Epilepsia. 2006 Feb;47(2):394-8
references: 16499766
references: Epilepsia. 2006 Dec;47(12):2011-9
references: 17201697
references: Arch Intern Med. 2010 Sep 13;170(16):1442-9
references: 20837830
references: Neurology. 2005 Jan 11;64(1):50-4
references: 15642903
references: Handb Clin Neurol. 2012;107:99-111
references: 22938965
references: Neurology. 2001 Jun 12;56(11):1445-52
references: 11402099
references: Arch Dis Child. 2013 Mar;98(3):167
references: 23341485
references: Epilepsia. 2007 Jun;48(6):1062-6
references: 17553117
references: Epilepsia. 2001 Apr;42(4):464-75
references: 11440341
references: Epilepsia. 1996 Oct;37(10):951-5
references: 8822693
references: Epilepsy Behav. 2003 Feb;4(1):19-25
references: 12609224
references: Neurology. 2013 Mar 26;80(13):1231-9
references: 23468549
references: Epilepsia. 2011 Jan;52 Suppl 1:7-12
references: 21214534
references: BMJ. 2012 Jan 26;344:e281
references: 22282528
references: Epilepsia. 2007 Jun;48(6):1128-32
references: 17442010
references: Dev Med Child Neurol. 2007 Sep;49(9):707-16
references: 17718830
references: Neurology. 2012 Apr 17;78(16):1200-6
references: 22442428
references: Med Care. 2002 Dec;40(12):1196-209
references: 12458302
references: Epilepsy Behav. 2005 Sep;7(2):259-65
references: 16054871
references: J Child Neurol. 2013 Jan;28(1):13-20
references: 22566712
references: Epilepsy Behav. 2012 Aug;24(4):468-73
references: 22770880
references: Can J Neurol Sci. 2012 Mar;39(2):134-44
references: 22343145
references: Epilepsia. 1996 Jan;37(1):19-23
references: 8603618
references: Dev Med Child Neurol. 2013 Feb;55(2):154-161
references: 23163885
references: BMC Pediatr. 2012 Jul 25;12:108
references: 22830456
references: Br J Radiol. 2012 Sep;85(1017):1236-42
references: 22573303
references: Neurology. 2000 Sep 12;55(5):616-23
references: 10980722
references: Neurology. 2011 Jan 4;76(1):94-9
references: 21205698
references: Ann Neurol. 2012 Jun;71(6):732-42
references: 22718542
references: N Engl J Med. 2012 Aug 30;367(9):787-90
references: 22830434
references: Neurology. 2010 Aug 24;75(8):699-704
references: 20733145
references: Epilepsia. 2010 Oct;51(10):2175-89
references: 20608959
references: Pediatr Neurol. 2008 Dec;39(6):418-22
references: 19027588
references: Seizure. 2011 Mar;20(2):101-6
references: 21123090
references: Epilepsia. 2003 Jun;44(6):741-51
references: 12790886
references: Arch Dis Child. 2006 Mar;91(3):214-8
references: 16492885
references: Arch Pediatr Adolesc Med. 1997 Dec;151(12):1242-6
references: 9412601
references: JAMA. 2011 Apr 27;305(16):1669-76
references: 21521848
references: Arch Dis Child. 2006 Mar;91(3):219-21
references: 16492886
references: Epilepsia. 2006 Jul;47(7):1094-120
references: 16886973
references: Can J Neurol Sci. 2005 Nov;32(4):409-18
references: 16408569
references: Epilepsia. 2011 May;52(5):957-64
references: 21320113
references: Epilepsia. 2010 Jun;51(6):1069-77
references: 19889013
references: Neurol Clin Pract. 2012 Dec;2(4):335-342
references: 23634376
references: Epilepsia. 2011 Jul;52(7):1359-64
references: 21668442
references: Nat Rev Neurol. 2012 Jun 19;8(7):380-90
references: 22710628
references: N Engl J Med. 2003 Jun 26;348(26):2635-45
references: 12826639
references: Neurology. 2004 May 25;62(10):1668-81
references: 15159460
references: Epilepsia. 2009 Sep;50(9):2147-53
references: 19389145
references: Cochrane Database Syst Rev. 2013 Feb 28;(2):CD003277
references: 23450537