Managing Functional Neurological Disorders: Protocol of a Cohort Study on Psychogenic Non-Epileptic Seizures Study
Received 23 October 2019
Accepted for publication 20 November 2019
Published 27 December 2019 Volume 2019:15 Pages 3557—3568
Checked for plagiarism Yes
Review by Single-blind
Peer reviewer comments 2
Editor who approved publication: Dr Roger Pinder
Hamada Hamid Altalib,1,2 Daniela Galluzzo,3 Stephanie Argraves,1,4 Joseph Goulet,1,5 Yarden Bornovski,1,2 Kei-Hoi Cheung,1,5 Ebony Jackson-Shaheed,1,2 Benjamin Tolchin,1,2 Brenda T Fenton,1 Mary Jo Pugh6,7
1VA Connecticut Healthcare System, West Haven, CT, USA; 2Comprehensive Epilepsy Center, Department of Neurology, Yale School of Medicine, New Haven, CT, USA; 3Westchester Medical Center, Westchester, NY, USA; 4Department of Psychiatry, Yale School of Medicine, New Haven, CT, USA; 5Department of Emergency Medicine, Yale School of Medicine, New Haven, CT, USA; 6University of Utah, Salt Lake City, UT, USA; 7Salt Lake City Veterans Healthcare System, Salt Lake City, UT, USA
Correspondence: Hamada Hamid Altalib
VA Connecticut Healthcare System, West Haven, CT, USA
Background: Functional neurological disorders (FNDs) are neurological symptoms that cannot be explained by an underlying neurological lesion or other medical illness and that do not have clear neuropathological correlates. Psychogenic non-epileptic seizures (PNES) are a common and highly disabling form of FND, characterized by paroxysmal episodes of involuntary movements and altered consciousness that can appear clinically similar to epileptic seizures. PNES are unique among FNDs in that they are diagnosed by video electroencephalographic (VEEG), a well-established biomarker for the disorder. The course of illness and response to treatment of PNES remain controversial. This study aims to describe the epidemiology of PNES in the Department of Veterans Affairs Healthcare System (VA), evaluate outcomes of veterans offered different treatments, and compare models of care for PNES.
Methods: This electronic health record (EHR) cohort study utilizes an informatics search tool and a natural language processing algorithm to identify cases of PNES nationally. We will use VA inpatient, outpatient, pharmacy, and chart abstraction data across all 170 medical centers to identify cases in fiscal years 2002–2018. Outcome measurements such as seizure frequency, emergency room visits, hospital admissions, suicide-related behavior, and the utilization of psychotherapy prior to and after PNES diagnosis will be used to assess the effectiveness of models of care.
Discussion: This study will describe the risk factors and course of treatment of a large cohort of people with PNES. Since PNES are cared for by a variety of different modalities, treatment orientations, and models of care, effectiveness outcomes such as seizure outcomes and utilization of emergency visits for seizures will be assessed. Outcome measurements such as seizure frequency, emergency room visits, hospital admissions, suicide-related behavior, and psychotherapy prior to and after PNES diagnosis will be used to assess the effectiveness of models of care.
Keywords: Veterans Administration, VA, electronic health record, EHR, psychogenic non-epileptic seizures, PNES, functional neurological disorders, FND
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