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September 24, 2013; 81 (13) Views & Reviews

Priorities in pediatric epilepsy research

Improving children's futures today

Anne T. Berg, Christine B. Baca, Tobias Loddenkemper, Barbara G. Vickrey, Dennis Dlugos
First published August 21, 2013, DOI: https://doi.org/10.1212/WNL.0b013e3182a55fb9
Anne T. Berg
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.
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Christine B. Baca
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.
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Tobias Loddenkemper
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.
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Barbara G. Vickrey
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.
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Dennis Dlugos
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.
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Citation
Priorities in pediatric epilepsy research
Improving children's futures today
Anne T. Berg, Christine B. Baca, Tobias Loddenkemper, Barbara G. Vickrey, Dennis Dlugos
Neurology Sep 2013, 81 (13) 1166-1175; DOI: 10.1212/WNL.0b013e3182a55fb9

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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.

GLOSSARY

NAEC=
National Association of Epilepsy Centers

Footnotes

  • Go to Neurology.org for full disclosures. Funding information and disclosures deemed relevant by the authors, if any, are provided at the end of the article.

  • Received April 1, 2013.
  • Accepted in final form June 26, 2013.
  • © 2013 American Academy of Neurology
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  • Article
    • Abstract
    • GLOSSARY
    • WORKSHOP THEMES
    • STAKEHOLDERS AND FACTORS IN THE DIAGNOSTIC AND TREATMENT PROCESS
    • PROCESS OF DIAGNOSIS AND TREATMENT
    • PATIENT-EXPRESSED PRIORITIES VS THE STANDARD APPROACH: DO WE NEED A NEW MODEL?
    • KNOWLEDGE GAPS
    • CHALLENGES TO PROGRESS
    • CONCLUSIONS
    • CONTRIBUTORS
    • AUTHOR CONTRIBUTIONS
    • STUDY FUNDING
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