Epileptic Disorders


Knowledge gaps for functional outcomes after multilobar resective and disconnective pediatric epilepsy surgery: Conference Proceedings of the Patient-Centered Stakeholder Meeting 2019 Volume 24, issue 1, February 2022


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1 The Brain Recovery Project: Childhood Epilepsy Surgery Foundation, Los Angeles, CA, USA
2 John A. Burns School of Medicine, University of Hawaii, Honolulu, Hawaii, USA
3 Jane and John Justin Neurosciences Center, Cook Children's Hospital, Fort Worth, TX, USA
4 Department of Psychology and Neuroscience Institute, Carnegie Mellon University, Pittsburgh, PA, USA
5 Department of Communication Sciences and Disorders, MGH Institute of Health Professions, Boston, MA, USA; Harvard Graduate School of Education, Cambridge, MA, USA; Department of Brain and Cognitive Sciences, Massachusetts Institute of Technology, Cambridge, MA, USA
6 Department of Neurosurgery and Pediatrics, University of California at Los Angeles, Los Angeles, CA, USA
7 Department of Neuroscience, University of Lethbridge, Lethbridge, AB, CA, USA
8 Department of Speech, Language, and Hearing Sciences, University of Arizona, Tucson, AZ, USA
9 Division of the Humanities and Society Sciences, California Institute of Technology, Pasadena, CA, USA
10 Department of Epidemiology and Biostatistics, University of Western Ontario, London, ON, CA, USA
11 Department of Neuropsychology, Kennedy Krieger Institute, Baltimore, MD, USA, Department of Physical Medicine and Rehabilitation, Johns Hopkins University School of Medicine, Baltimore, MD, USA
12 Department of Neurology, University of California at Los Angeles, Los Angeles, CA, USA
13 Department of Psychology, University of Toronto, Mississauga, ON, CA, USA
14 Department of Neurology, Epilepsy Center, Neurological Institute, Cleveland Clinic, Cleveland, OH, USA
15 Department of Psychiatry, University of California at Los Angeles, Los Angeles, CA, USA
16 Department of Neurosurgery, Baylor College of Medicine; Division of Pediatric Neurosurgery, Department of Surgery, Texas Children's Hospital, Houston, TX, USA
17 Department of Pediatric Orthopedic Surgery, Advent Health Medical Group, Orlando, FL, USA
18 Department of Pediatric Endocrinology, University of Colorado, Boulder, CO, USA
19 Department of Neurological Surgery, University of Pittsburgh School of Medicine, Pittsburgh, PA, USA
* Correspondence: Monika Jones The Brain Recovery Project: Childhood Epilepsy Surgery Foundation, Los Angeles, CA, USA

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. Collaboration around common objectives will lead to better informed counseling around postoperative expectations and management for children undergoing epilepsy surgery.