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Knowledge gaps for functional outcomes after multilobar resective and disconnective pediatric epilepsy surgery: Conference Proceedings of the Patient-Centered Stakeholder Meeting 2019

Jones, Monika and Harris, William B. and Perry, M. Scott and Behrmann, Marlene and Christodoulou, Joanna and Fallah, Aria and Kolb, Bryan and Musiek, Frank and Paul, Lynn K. and Puka, Klajdi and Salorio, Cynthia and Sankar, Raman and Smith, Mary Lou and Valappil, Ahsan Moosa Naduvil and Walshaw, Patricia and Weiner, Howard L. and Woo, Raymond and Zeitler, Phillip and Abel, Taylor J. (2022) Knowledge gaps for functional outcomes after multilobar resective and disconnective pediatric epilepsy surgery: Conference Proceedings of the Patient-Centered Stakeholder Meeting 2019. Epileptic Disorders . ISSN 1294-9361. doi:10.1684/epd.2021.1373. (In Press) https://resolver.caltech.edu/CaltechAUTHORS:20220104-203346396

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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.


Item Type:Article
Related URLs:
URLURL TypeDescription
https://doi.org/10.1684/epd.2021.1373DOIArticle
https://www.jle.com/fr/revues/epd/e-docs/knowledge_gaps_for_functional_outcomes_after_multilobar_resective_and_disconnective_pediatric_epilepsy_surgery_conference_proceedings_of_the_patient_centered_stakeholder_meeting_2019_321384/article.phtmlPublisherArticle
ORCID:
AuthorORCID
Paul, Lynn K.0000-0002-3128-8313
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.
Funders:
Funding AgencyGrant Number
Patient Centered Outcomes Research InstituteUNSPECIFIED
Eugene Washington PCORI Engagement AwardUNSPECIFIED
Subject Keywords:pediatric epilepsy, hemispherectomy, hemispherotomy, multi-lobar epilepsy surgery, functional outcome
DOI:10.1684/epd.2021.1373
Record Number:CaltechAUTHORS:20220104-203346396
Persistent URL:https://resolver.caltech.edu/CaltechAUTHORS:20220104-203346396
Official Citation:Monika Jones, William B. Harris, M. Scott Perry, Marlene Behrmann, Joanna Christodoulou, Aria Fallah, Bryan Kolb, Frank Musiek, Lynn K. Paul, Klajdi Puka, Cynthia Salorio, Raman Sankar, Mary Lou Smith, Ahsan Moosa Naduvil Valappil , Patricia Walshaw, Howard L. Weiner, Raymond Woo, Phillip Zeitler, Taylor J. Abel. Knowledge gaps for functional outcomes after multilobar resective and disconnective pediatric epilepsy surgery: Conference Proceedings of the Patient-Centered Stakeholder Meeting 2019. Epileptic Disorders. [Epub ahead of print]. doi: 10.1684/epd.2021.1373
Usage Policy:No commercial reproduction, distribution, display or performance rights in this work are provided.
ID Code:112670
Collection:CaltechAUTHORS
Deposited By: Tony Diaz
Deposited On:04 Jan 2022 21:17
Last Modified:04 Jan 2022 21:17

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