BACKGROUND AND OBJECTIVES:The purpose of this study was to develop national consensus based on expert opinion on the optimal outpatient care model of pediatric psychogenic nonepileptic seizures (PNES). METHODS:A core working group (CWG) within the PNES special interest group of the Pediatric Epilepsy Research Consortium was established. The CWG developed a rigorous scoring rubric to select experts in pediatric PNES within the United States of America and a three-round Delphi study was conducted to assess consensus on key components of the management of pediatric PNES in the outpatient setting. RESULTS:Eighteen experts representing neurology, psychology, psychiatry, social work and nursing participated in the study. Strong consensus was reached that the multidisciplinary clinic (MDC) model is the gold standard for the outpatient management of pediatric PNES. Consensus was obtained that a neurologist, psychologist and social worker are essential members of the MDC and in the setting of unlimited resources, psychiatry and nursing are also recommended. Further consensus was established on the roles of specific personnel, structure of the clinic, billing practices, trainee inclusion, patient inclusion and exclusion, and end of visit management. While consensus was reached that a new term should be developed for this diagnosis, consensus was not reached on the ideal term. DISCUSSION:Expert consensus was established for the multidisciplinary management of pediatric PNES in the outpatient setting. Specific recommendations were provided that can facilitate the development and implementation of MDCs in other institutions. Further prospective studies are warranted to validate this practice model.

BACKGROUND:Psychogenic nonepileptic seizures (PNES) are a common type of functional neurological disorder in which patients experience seizurelike episodes. Health disparities based on race and socioeconomics, documented in children with epilepsy and adults with PNES, have not been reported in children and adolescents with PNES. We hypothesize that disparities exist in this population, which impact overall care and therefore influence outcomes. METHODS:We retrospectively analyzed youth referred to our multidisciplinary clinic from 2018 to 2020. All patient charts were screened by social work before the visit to identify potential barriers to care, and a nurse conducted follow-up calls. Patients' race was identified from the electronic health record and compared with several variables. Outcomes were collected via phone follow-up. Descriptive statistics were produced, and comparisons between white patients and patients of other races were completed using Fisher exact tests and multivariable logistic regressions. RESULTS:During the study period, 237 patients were eligible for the analysis. Sixty-eight patients (29%) identified as a race other than white. Only 60%, 56%, and 40% of the cohort were reached for follow-up at one, three, and 12 months, respectively. In general, outcomes were similar between racial groups; however, we found that patients of nonwhite race were more likely to receive support from social work due to barriers identified in screening (P = 0.045). CONCLUSIONS:Health disparities based on race may exist in youth with PNES. A multidisciplinary clinic including social work may help mitigate barriers leading to more equitable care and similar outcomes for white and nonwhite youth with PNES.

Background and Objectives:Psychogenic nonepileptic seizures (PNES) are paroxysmal events that resemble epileptic seizures but have psychological underpinnings. Patients with PNES have high health care utilization. We hypothesize that appropriate care would lead to decreases in utilization. The aim of this study was to measure the impact of a multidisciplinary PNES clinic in reducing health care utilization (HCU) in youth with PNES referred to the clinic.Methods:We reviewed the frequency of visits to the emergency department (ED), urgent care (UC), planned and unplanned hospitalizations, neurodiagnostic studies, and total charges associated with these encounters 12 months before and 12 months after initial referral to the clinic. Manual chart review of all patients referred from November 2017 to March 2020 was performed.Results:Two hundred and twelve unique patients were included in this retrospective study. Patient sex was identified as 71% female, 28% male, and 1% other, with an average age of 14 years at diagnosis. These patients visited the ED a total of 410 times before being seen in the PNES clinic, which decreased to 187 visits after (75% reduction). All measures of HCU decreased in the 12 months after the visit, and statistically significant differences were observed in all measures of HCU except for head MRIs, leading to an estimated potential cost savings of $7,978,447.Discussion:Patients with PNES were found to have decreased health care utilization in the 12 months after referral to the Nationwide Children's Hospital multidisciplinary clinic, including significant decreases in emergency services and unnecessary diagnostic testing, in the 12 months after the referral.

This is a retrospective case series of pediatric patients referred to the psychogenic nonepileptic events clinic (PNEE) who had comorbid diagnoses of autism spectrum disorder (ASD) or intellectual disability (ID). We describe 15 patients, nine with ASD and six with ID who had a telephone visit follow-up at 12 months. There were higher rates of male gender (40%) and comorbid epilepsy (53%) compared to the larger PNEE cohort. Eleven patients were available for follow-up and ten patients had improvement in events or were event-free. We report that patients with ASD or ID can develop PNEE and experience improvement from events.

INTRODUCTION:Psychogenic nonepileptic events (PNEE) are a type of Functional Neurological Symptom Disorder that present with events that appear epileptic but are not associated with abnormal electrical activity in the brain. In response to the global COVID-19 pandemic, our PNEE clinic switched to a telemedicine format, and we present here our experience with providing care to children and adolescents with PNEE in this format. METHODS:The multidisciplinary clinic shifted to a telemedicine platform in March 2020 with the same joint provider format. Follow-up phone calls are completed at one and three months following the visit. Data are presented with descriptive statistics. Referral volume and outcomes data are compared to historical patients, including rates of diagnosis acceptance, linkage to counseling, and change in event frequency. RESULTS:Twenty-three patients were scheduled to be seen via telemedicine or hybrid visits from March through June, twenty completed their visits. Sixteen (70%) were reached for follow-up at one month. Of those reached, twelve (75%) accepted the diagnosis, eight (50%) were linked with counseling, and fourteen (88%) with improvement in event frequency. Of the sixteen reached at three months, eleven (69%) had accepted the diagnosis, ten (63%) were linked with counseling, and all but two reported improvement in event frequency. In comparison, the previously published results showed 3-month rates of 75% of patients accepting the diagnosis, 76% linked with counseling, and 75% with improvement in event frequency. CONCLUSIONS:Video telemedicine visits are a feasible and effective way to provide care for children and adolescents with PNEE. At 3 months, patients seen by telemedicine had similar acceptance rates, decreased connection to counseling, and increased rate of improvement in event frequency. This study suggests telemedicine may have some benefits over traditional clinic visits, such as improved show rates and access to clinic; so should be considered a reasonable alternative to in-person visits.

Objective Psychogenic nonepileptic seizures (PNES) are paroxysmal events that may involve altered subjective experience and change in motor activity with a psychological cause. The aim of this work is to describe a population of pediatric patients with PNES and identify factors predictive of 12-month outcomes. Methods We conducted a prospective observational study of children and adolescents referred to the multidisciplinary Nationwide Children's Hospital PNES clinic between November 2017 and July 2019. Information was collected from patients during clinic visits and semistructured follow-up phone calls. Descriptive statistics and Fisher exact test were used for analysis. Results Of the 139 consecutive patients referred to the PNES clinic, 104 were seen in clinic and 63 answered 12-month follow-up calls. Patients with comorbid epilepsy had increased rates of participation at 12-month follow-up (p = .04). Complete remission was achieved by 32% (20/63) of patients at 12 months. Combined PNES remission and improvement was 89% (56/63) at 12 months. Patients and families who were linked with counseling at 1 month were more likely to achieve remission at 12 months (p = .005). Less than half (44%, 28/63) of patients reached at 12 months had their events documented on video-electroencephalogram (EEG) at diagnosis; however, those who did were not more likely to be accepting of the diagnosis at 12 months (p = 1.0), be linked with counseling at 12 months (p = .59), or be event-free at 12 months (p = .79). Significance Remission occurred in one third of patients by 12 months; however, improvement in events was seen in 89%. Connection to counseling by 1 month was associated with increased remission rates at 12 months. Capturing events on video-EEG was not associated with increased acceptance or event freedom at 12 months. Diagnosis should be followed by strong encouragement to connect with counseling quickly to achieve a goal of increasing 12-month PNES remission rates.

Background: Psychogenic nonepileptic events (PNEE) are paroxysmal events that resemble epileptic seizures but are caused by psychological factors. Coordination of care has been recommended as one strategy to integrate care and improve outcomes. We aim to evaluate patient outcomes in a multidisciplinary pediatric psychogenic nonepileptic events clinic that includes care coordination. Methods: All patients referred to the multidisciplinary psychogenic nonepileptic events clinic were entered into a prospective database. Follow-up calls were made by the clinic nurse at 1 and 3 months following the visit. Results: A total of 101 unique patients were reviewed. Ninety-six appointments were scheduled, and 83 appointments were completed (86%). Social work identified barriers in 38 patients, and 76% of those assisted completed their appointment. At 1 month, two-thirds of families were reached, 50% were accepting of the diagnosis, and 70% had clinical improvement in events. By 3 months, 75% had clinical improvement, 76% were receiving mental health services, and 73% were accepting of the diagnosis; however, more had also returned to the emergency department. Families needing assistance from social work tended to have worse outcomes. Increase in acceptance was nearly statistically significant ( P = .058) from 1 to 3 months; however, it was not so for clinical improvement in events ( P = .623). Conclusions: Implementation of a multidisciplinary team with care coordination allowed for follow-up for children and adolescents with psychogenic nonepileptic events and mitigation of barriers to care and can improve clinical outcomes. After being seen in our clinic, many families had accepted the diagnosis, most of the patients reached had event improvement and were successfully linked with counseling at the 1- and 3-month follow-ups.

Thursday, April 30April 14, 2020Free AccessPsychogenic Nonepileptic Events in Pediatric Patients with Autism (5193)Daniel Freedman, Deborah Terry, Laurie Enciso, Kristen Trott, Maggie Burch, and Dara AlbertAuthors Info & AffiliationsApril 14, 2020 issue94 (15_supplement)https://doi.org/10.1212/WNL.94.15_supplement.5193 Letters to the Editor

Objective: Conversion disorder has a significant impact on families and the healthcare system. A recent review suggests there is little uniformity in treating this population. This paper describes an inpatient treatment program emphasizing physical conditioning and less time uncovering the psychological underpinnings of the presentation. Design: This study included 100 pediatric patients admitted to an inpatient rehabilitation setting with lower extremity weakness/dysfunction not explained by a medical cause. Patients followed a 16-step goal hierarchy to increase physical function. Patients participated in three hours of therapy and met with a psychologist and teacher daily. Patient functioning was assessed at three time periods using the mobility items of the Functional Independence Measure for Children (WeeFIM). Results: Ninety-four patients completed the program. The average length of stay was 10 days. There were no significant differences between gender, length of stay, or insurance. Data was collected from 73 participants at a two-month follow-up. A repeated measures analysis of variance (ANOVA), using time points at admission, discharge, and follow-up, revealed significant improvements over time. Post-hoc contrasts showed differences with admission and discharge but no differences between discharge and follow-up, suggesting gains in mobility remained. Conclusion: This paper describes an inpatient program that effectively treats patients with conversion disorder in a relatively short period. The physical gains made during hospitalization persisted over time and suggest inpatient rehabilitation focusing on physical mobility could be a more financially beneficial approach than outpatient treatment. Future considerations include identifying a more robust assessment process for patients to determine other psychological characteristics that might impact successful, more short-term treatment.

Psychogenic nonepileptic events (PNEE) are paroxysmal changes in behavior resembling epileptic seizures but with no electrographic correlate and are instead caused by psychological factors. In this qualitative study, semistructured interviews were conducted with 10 school nurses to identify how they perceive the experience of caring for a student with PNEE as well as supportive factors and barriers to optimal management of PNEE in schools. Several themes were identified: lack of diagnosis awareness by school staff leading to impressions that the student was "faking" the events, inadequate information provided by a health-care provider regarding the diagnosis in general and specifically about the individual student leading to a reliance on information from the student's family, feelings of doubt and insecurity about the diagnosis and management of the events, and reliance on the school nurse to develop a response plan and to manage the events which can be very time-consuming.