<p>Managing Functional Neurological Disorders: Protocol of a Cohort Study on Psychogenic Non-Epileptic Seizures Study</p>

Abstract

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.

When neurologists diagnose functional neurological disorder, why don’t they code for it?

“…ICD-10 codes are the entry point for many types of investigation in FND, including epidemiologic, economic, and prognostic assessments. 26,27 Our findings suggest that prior research may markedly underestimate the true frequency and cost of FND, an undercount predicted by Stephen et al, 2 which skews our understanding of the natural history and impact of FND.…”

Suicide and Seizures

“…The sample (n = 801,734) was drawn from an existing cohort study that includes men and women veterans enrolled in Veterans Health Administration (VHA) care from October 2002 to 2017. 10 A validated set of ICD-9 and - 10 codes for intentional or undetermined violent deaths (defined as completed suicide) was obtained from the VA Suicide Data Repository. 11,12…”

“…Groups were divided into veterans coded for PNES, veterans coded for epilepsy, and the general veteran group composed of veterans without coding for PNES or epilepsy. 2,10 People with combined PNES and epilepsy were removed from the analysis. The sample (n = 801,734) was drawn from an existing cohort study that includes men and women veterans enrolled in Veterans Health Administration (VHA) care from October 2002 to 2017.…”

Case report on psychogenic nonepileptic seizures: A series of unfortunate events

“…The risk factors described in PNES include, but are not limited to, sexual abuse, anxiety disorder, physical abuse or neglect, traumatic brain injury, and psychiatric comorbidities, with high post‐traumatic stress disorder (PTSD) rates 6,14 . Additionally, evidence supports that universally felt stressors, such as mass casualties and natural disasters, may increase FNDs in adults and children 15–18 .…”

“…15 Conflicting views on the course of illness and limited research on treatment response contribute to the controversy of PNES. 14 As such, current guidelines emphasize that diagnosis of PNES should rest on clear positive evidence, typically from a combination of physical signs and examination of the nature of seizures, and benefits significantly from multidisciplinary evaluation. 1,19 In this report, we present a case of PNES in a 64-year-old patient describing the challenges to diagnosis and its clinical peculiarities.…”