Priorities in pediatric epilepsy research: Improving children's futures today

Neurology

Volumn 81, Issue 13, 2013, Pages 1166-1175

  Berg, Anne T ^a   Baca, Christine B ^b,c   Loddenkemper, Tobias ^d   Vickrey, Barbara G ^b,c   Dlugos, M Dennis ^e  

^a CHILDREN'S MEMORIAL HOSPITAL   (United States)

^b UNIVERSITY OF CALIFORNIA   (United States)

^c VA GREATER LOS ANGELES HEALTHCARE SYSTEM   (United States)

^d BOSTON CHILDREN S HOSPITAL   (United States)

^e UNIVERSITY OF PENNSYLVANIA   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

ANTICONVULSIVE AGENT;

DECISION MAKING; DIAGNOSTIC ACCURACY; EARLY DIAGNOSIS; EPILEPSY; FAMILY; HEALTH CARE SYSTEM; HUMAN; INTEGRATION; INTERPERSONAL COMMUNICATION; OUTCOME ASSESSMENT; PARENTAL ATTITUDE; PATIENT CARE; PATIENT MONITORING; PRIORITY JOURNAL; REVIEW; SOCIAL BEHAVIOR; SOCIAL STATUS; TREATMENT RESPONSE; DEVELOPMENTAL DISORDER; HEALTH CARE DELIVERY; KNOWLEDGE; MEDICAL RESEARCH; PEDIATRICS; PRESCHOOL CHILD; PSYCHOLOGICAL ASPECT;

BIOMEDICAL RESEARCH; CHILD, PRESCHOOL; DELIVERY OF HEALTH CARE; DEVELOPMENTAL DISABILITIES; EPILEPSY; FAMILY; HUMANS; KNOWLEDGE; PEDIATRICS;

EID: 84888351753     PISSN: 00283878     EISSN: 1526632X     Source Type: Journal    
DOI: 10.1212/WNL.0b013e3182a55fb9     Document Type: Review

References (60)

1. Institute of Medicine. Epilepsy Across the Spectrum: Promoting Health and Understanding. Washington, DC: The National Academies Press; 2012.
2. Berg AT, Shinnar S, Levy SR, Testa F, Smith-Rapaport S, Beckerman B. Early development of intractable epilepsy in children: A prospective study. Neurology 2001;56:1445-1452. (Pubitemid 32532255)
3. Camfield CS, Camfield PR, Gordon K, Wirrell E, Dooley JM. Incidence of epilepsy in childhood and adolescence: A population-based study in Nova Scotia from 1977 to 1985. Epilepsia 1996;37:19-23. (Pubitemid 26021571)
4. Olafsson E, Hauser WA, Ludvigsson P, Gudmundsson G. Incidence of epilepsy in rural Iceland: A population-based study. Epilepsia 1996;37:951-955. (Pubitemid 26314955)
5. Camfield P, Camfield C. Long-term prognosis for symptomatic (secondarily) generalized epilepsies: A populationbased study. Epilepsia 2007;48:1128-1132. (Pubitemid 46854875)
6. Wirrell E, Farrell K, Whiting S. The epileptic encephalopathies of infancy and childhood. Can J Neurol Sci 2005; 32:409-418. (Pubitemid 41788898)
7. Berg AT. Epilepsy, cognition, and behavior: The clinical picture. Epilepsia 2011;52(suppl 1):7-12.
8. Wood LJ, Sherman EMS, Hamiwka LD, Blackman MA, Wirrell EC. Maternal depression: The cost of caring for a child with intractable epilepsy. Pediatr Neurol 2008;39:418-422.
9. Jallon P, Loiseau P, Loiseau J. Newly diagnosed unprovoked epileptic seizures: presentation at diagnosis in CAROLE Study. Epilepsia 2001;42:464-475. (Pubitemid 32322191)
10. O'Callaghan FJK, Lux AL, Darke K, et al. The effect of lead time to treatment and of age of onset on developmental outcome at 4 years in infantile spasms: evidence from the United Kingdom Infantile Spasms Study. Epilepsia 2011; 52:1359-1364.
11. Chapman M, Iddon P, Atkinson K, et al. The misdiagnosis of epilepsy in people with intellectual disabilities: A systematic review. Seizure 2011;20:101-106.
12. Kim HL, Donnelly JH, Tournay AE, Book TM, Filipek P. Absence of seizures despite high prevalence of epileptiform EEG abnormalities in children with autism monitored in a tertiary care center. Epilepsia 2006;47:394-398.
13. Sirven JI, Lopez RA, Vazquez B, VanHaverbeke P. Que es la Epilepsia? Attitudes and knowledge of epilepsy by Spanishspeaking adults in the United States. Epilepsy Behav 2005;7: 259-265. (Pubitemid 41149529)
14. Cooper W, Federspiel CF, Griffin MR, Hickson GB. The use of anticonvulsant medications among children enrolled in the Tennessee medicaid program. Arch Pediatr Adolesc Med 1997;151:1242-1246. (Pubitemid 27527956)
15. Modi AC, Rausch JR, Glauser TA. Patterns of nonadherence to antiepileptic drug therapy in children with newly diagnosed epilepsy. JAMA 2011;305:1669-1676.
16. Burneo JG, Black L, Knowlton RC, Faught E, Morawetz R, Kuzniecky RI. Racial disparities in the use of surgical treatment for intractable temporal lobe epilepsy. Neurology 2005;64:50-54. (Pubitemid 40082936)
17. Begley C, Basu R, Lairson D, et al. Socioeconomic status, health care use, and outcomes: persistence of disparities over time. Epilepsia 2011;52:957-964.
18. Smedley BD, Stith AY, Nelson AR, editors; Institute of Medicine. Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care. Washington, DC: National Academies Press; 2003.
19. Swarztrauber K, Dewar S, Engel J. Patient attitudes about treatments for intractable epilepsy. Epilepsy Behav 2003;4: 19-25. (Pubitemid 36546449)
20. Englot DJ, Ouyang D, Garcia PA, Barbaro NM, Chang EF. Epilepsy surgery trends in the United States, 1990-2008. Neurology 2012;78:1200-1206.
21. Reid R, Friedberg MW, Adams JL, McGlynn EA, Mehrotra A. Associations between physician characteristics and quality of care. Arch Intern Med 2010;170:1442-1449.
22. Baca CB, Vickrey BG, Vassar S, et al. Time to pediatric epilepsy surgery is related to both disease severity and nonclinical factors. Neurology 2013;80:1231-1239.
23. Swarztrauber K, Vickrey BG, Mittman BS. Physicians' preferences for specialty involvement in the care of patients with neurological conditions. Med Care 2002;40:1196-1209.
24. Epilepsy Support Network. Available at: http://www.epilepsysupportnet. org/Accessed April 1, 2013.
25. Cross JH. Pitfalls in the diagnosis and differential diagnosis of epilepsy. Paediatr Child Health 2009;19:199-202.
26. Hamiwka LD, Singh N, Niosi J, Wirrell EC. Diagnostic inaccuracy in children referred with first seizure: role for a first seizure clinic. Epilepsia 2007;48:1062-1066. (Pubitemid 46854867)
27. Anand G, McShane T. Is paediatric epilepsy getting less common? Arch Dis Child 2013;98:167.
28. Hindley D, Ali A, Robson C. Diagnoses made in a secondary care fits, faints, and funny turns clinic. Arch Dis Child 2006;91:214-218. (Pubitemid 43325496)
29. Uldall P, Alving J, Hansen LK, Kibæk M, Buchholt J. The misdiagnosis of epilepsy in children admitted to a tertiary epilepsy centre with paroxysmal events. Arch Dis Child 2006;91:219-221. (Pubitemid 43325497)
30. McKay MT, Weiss SK, Adams-Webber T, et al. Practice parameter: medical treatment of infantile spasms. Neurology 2004;62:1668-1681.
31. Pellock JM, Hrachovy R, Shinnar S, et al. Infantile spasms: A U.S. consensus report. Epilepsia 2010;51:2175-2189.
32. Wheless J, Gibson P, Rosbeck K, et al. Infantile spasms (West syndrome): update and resources for pediatricians and providers to share with parents. BMC Pediatr 2012;12:108.
33. Wang JC, Jonas R, Fu CM, Ng CY, Douglass L. Qualityof- care indicators for infantile spasms. J Child Neurol 2013;28:13-20.
34. Glauser T, Ben-Menachem E, Bourgeois B, et al. ILAE treatment guidelines: evidence-based analysis of antiepileptic drug efficacy and effectiveness as initial monotherapy for epileptic seizures and syndromes. Epilepsia 2006;47:1094-1120. (Pubitemid 44086745)
35. Kwan P, Arzimanoglou A, Berg AT, et al. Definition of drug resistant epilepsy: consensus proposal by the ad hoc Task Force of the ILAE Commission on Therapeutic Strategies. Epilepsia 2010;51:1069-1077.
36. Labiner DM, Bagic AI, Herman ST, et al. Essential services, personnel, and facilities in specialized epilepsy centers: revised 2010 guidelines. Epilepsia 2010;51:2322-2333.
37. National Institute for Health and Care Excellence. The epilepsies: The diagnosis and management of the epilepsies in adults and children in primary and secondary care; 2012. Available at: http://guidance.nice.org.uk/cg137. Accessed April 1, 2013.
38. Wong-Kisiel LC, McKeon A, Wirrell EC. Autoimmune encephalopathies and epilepsies in children and teenagers. Can J Neurol Sci 2012;39:134-144.
39. Lancaster E, Dalmau J. Neuronal autoantigens: pathogenesis, associated disorders and antibody testing. Nat Rev Neurol 2012;8:380-390.
40. Berg AT, Cross JH. Classification of epilepsies and seizures: historical perspective and future directions. In: Stefan H, Theodore WH, editors. Handbook of Clinical Neurology. Amersterdam: Elsevier; 2012:99-111.
41. Nunes VD, Sawyer L, Neilson J, Sarri G, Cross JH. Diagnosis and management of the epilepsies in adults and children: summary of updated NICE guidance. BMJ 2012;344:e281.
42. Hirtz D, Ashwal S, Berg AT, et al. Evaluating a first nonfebrile seizure in children: An evidence-based practice parameter. Neurology 2000;55:616-623.
43. Gaillard WD, Chiron C, Cross JH, et al. Guidelines for imaging infants and children with recent-onset epilepsy. Epilepsia 2009;50:2147-2153.
44. Craven IJ, Griffiths PD, Bhattacharyya D, et al. 3.0 T MRI of 2000 consecutive patients with localisation-related epilepsy. Br J Radiol 2012;85:1236-1242.
45. Caplin DA, Rao JK, Filloux F, Bale JF, Van Orman C. Development of performance indicators for the primary care management of pediatric epilepsy: expert consensus recommendations based on the available evidence. Epilepsia 2006;47:2011-2019. (Pubitemid 44952251)
46. Klepper J, Leiendecker B. GLUT1 deficiency syndrome: 2007 update. Dev Med Child Neurol 2007;49:707-716. (Pubitemid 47316797)
47. Hancock EC, Cross JH. Treatment of Lennox-Gastaut syndrome. Cochrane Database Syst Rev 2013;(2): CD003277.
48. Vendrame M, Loddenkemper T. Approach to seizures, epilepsies, and epilepsy syndromes. Sleep Med Clin 2012;7:59-73.
49. Brunklaus A, Dorris L, Ellis R, et al. The clinical utility of an SCN1A genetic diagnosis in infantile-onset epilepsy. Dev Med Child Neurol 2013;55:154-161.
50. Nangia S, Millichap JJ, Berg AT, Nordli DR. Early exposure to carbamazepine, oxcarbazepine, phenytoin, and lamotrigine in epilepsy with myoclonic-atonic seizures is associated with worse outcome. Annual Meeting of the American Epilepsy Society; November 30-December 4, 2012; San Diego, CA.
51. McGlynn EA, Asch SM, Adams J, et al. The quality of health care delivered to adults in the United States. N Engl J Med 2003;348:2635-2645. (Pubitemid 36741592)
52. Fountain NB, VanNess PC, Swain-Eng R, et al. Quality improvement in neurology: AAN epilepsy quality measures-report of the Quality Measurement and Reporting Subcommittee of the American Academy of Neurology. Neurology 2011;76:94-99.
53. Wasade VS, Spanaki M, Iyengar R, Barkley GL, Schultz L. AAN epilepsy quality measures in clinical practice: A survey of neurologists. Epilepsy Behav 2012;24:468-473.
54. Wicks P, Fountain NB. Patient assessment of physician performance of epilepsy quality-of-care measures. Neurol Clin Pract 2012;2:335-342.
55. Engel J, Wiebe S, French J, et al. Practice parameter: Temporal lobe and localized neocortical resections for epilepsy. Epilepsia 2003;44:741-751. (Pubitemid 36753998)
56. Haneef Z, Stern J, Dewar S, Engel J. Referral pattern for epilepsy surgery after evidence-based recommendations: A retrospective study. Neurology 2010;75:699-704.
57. Mytinger JR, Joshi S. The current evaluation and treatment of infantile spasms among members of the Child Neurology Society. J Child Neurol 2012;27:1289-1294.
58. Vickrey BG, Hirtz D, Waddy S, Cheng EM, Johnston SC. Comparative effectiveness and implementation research: directions for neurology. Ann Neurol 2012;71:732-742.
59. Methodology Committee of the Patient-Centered Outcomes Research Institute (PCORI). Methodological standards and patient-centeredness in comparative effectiveness research: The PCORI perspective. JAMA 2012;307:1636-1640.
60. Gabriel SE, Normand SLT. Getting the methods right- The foundation of patient-centered outcomes research. N Engl J Med 2012;367:787-790.