Knowledge gaps for functional outcomes after multilobar resective and disconnective pediatric epilepsy surgery: Conference Proceedings of the Patient-Centered Stakeholder Meeting 2019
Creators
- Jones, Monika
- Harris, William B.1
- Perry, M. Scott2
- Behrmann, Marlene3
- Christodoulou, Joanna4, 5, 6
- Fallah, Aria7
- Kolb, Bryan8
- Musiek, Frank9
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Paul, Lynn K.10
- Puka, Klajdi11
- Salorio, Cynthia12
- Sankar, Raman7
- Smith, Mary Lou13
- Valappil, Ahsan Moosa Naduvil14
- Walshaw, Patricia7
- Weiner, Howard L.15, 16
- Woo, Raymond
- Zeitler, Phillip17
- Abel, Taylor J.18
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1.
University of Hawaii at Manoa
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2.
Cook Children's Medical Center
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3.
Carnegie Mellon University
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4.
MGH Institute of Health Professions
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5.
Harvard University
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6.
Massachusetts Institute of Technology
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7.
University of California, Los Angeles
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8.
University of Lethbridge
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9.
University of Arizona
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10.
California Institute of Technology
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11.
Western University
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12.
Kennedy Krieger Institute
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13.
University of Toronto
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14.
Cleveland Clinic
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15.
Baylor College of Medicine
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16.
Texas Children's Hospital
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17.
University of Colorado Boulder
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18.
University of Pittsburgh
Abstract
For children with medication-resistant epilepsy who undergo multilobar or hemispheric surgery, the goal of achieving seizure freedom is met with a variety of potential functional consequences, both favorable and unfavorable. However, there is a paucity of literature that comprehensively addresses the cognitive, medical, behavioral, orthopedic, and sensory outcomes across the lifespan following large epilepsy surgeries in childhood, leaving all stakeholders underinformed with regard to counseling and expectations. Through collaboration between clinicians, researchers, and patient / caregiver stakeholders, the "Functional Impacts of Large Resective or Disconnective Pediatric Epilepsy Surgery: Identifying Gaps and Setting PCOR Priorities" meeting was convened on July 18, 2019, to identify gaps in knowledge and inform various patient-centered research initiatives. Clinicians and researchers with content expertise presented the best available data in each functional domain which is summarized here. As a result of the meeting, the top three consensus priorities included research focused on postoperative: (1) hydrocephalus; (2) mental health issues; and (3) literacy and other educational outcomes. The proceedings of this meeting mark the first time research on functional outcomes after resective and disconnective pediatric epilepsy surgery has been codified and shared among multidisciplinary stakeholders. This joint initiative promotes continued collaboration in the field and ensures that advancements align with actual patient and family needs and experiences.
Additional Information
© 2022 John Libbey Eurotext. Received January 28, 2021; Accepted July 10, 2021. This program was partially funded through a Patient Centered Outcomes Research Institute® (PCORI®) Eugene Washington PCORI Engagement Award (EAIN - 00024)). The views, statements, and opinions presented in this publication are solely the responsibility of the author(s) and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute® (PCORI®), its Board of Governors or Methodology Committee. Additional funding was received from the American Epilepsy Society and DIXI Medical. None of the authors have any conflicts of interest to declare.Additional details
Identifiers
- Eprint ID
- 112670
- Resolver ID
- CaltechAUTHORS:20220104-203346396
Funding
- Patient Centered Outcomes Research Institute
- Eugene Washington PCORI Engagement Award
Dates
- Created
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2022-01-04Created from EPrint's datestamp field
- Updated
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2022-02-24Created from EPrint's last_modified field