Changing the culture of care for children and adolescents with functional neurological disorder.

As members of a multidisciplinary team of professionals who treat children and adolescents with functional neurological (conversion) disorder (FND), we highlight the pressing need to develop an FND-informed culture of care that takes into account recent advances in our understanding of this group of patients. Stories of clinical encounters in health care settings from around the world-told by children and adolescents with FND, their parents, and health professionals-portray an outdated culture of care characterized by iatrogenic stigma, erosion of empathy and compassion within the clinician-patient relationship, and a lack of understanding of FND and its complex neurobiology. After a brief exploration of the outdated culture, we share our counterstories: how we and our colleagues have worked, and continue to work, to create an FND-informed culture in the health systems where we practice. We discuss the therapeutic use of child-friendly language. We also discuss a range of structural, educational, and process interventions that can be used to promote FND-informed beliefs and attitudes, FND-informed clinician-patient encounters, and FND-informed referral processes, treatment pathways, and therapeutic interventions.

Creation and implementation of an electronic health record note for quality improvement in pediatric epilepsy: Practical considerations and lessons learned.

OBJECTIVE: To describe the development of the Pediatric Epilepsy Outcome-Informatics Project (PEOIP) at Alberta Children's Hospital (ACH), which was created to provide standardized, point-of-care data entry; near-time data analysis; and availability of outcome dashboards as a baseline on which to pursue quality improvement. METHODS: Stakeholders involved in the PEOIP met weekly to determine the most important outcomes for patients diagnosed with epilepsy, create a standardized electronic note with defined fields (patient demographics, seizure and syndrome type and frequency and specific outcomes- seizure type and frequency, adverse effects, emergency department visits, hospitalization, and care pathways for clinical decision support. These were embedded in the electronic health record from which the fields were extracted into a data display platform that provided patient- and population-level dashboards updated every 36 hours. Provider satisfaction and family experience surveys were performed to assess the impact of the standardized electronic note. RESULTS: In the last 5 years, 3,245 unique patients involving 13, 831 encounters had prospective, longitudinal, standardized epilepsy data accrued via point-of-care data entry into an electronic note as part of routine clinical care. A provider satisfaction survey of the small number of users involved indicated that the vast majority believed that the note makes documentation more efficient. A family experience survey indicated that being provided with the note was considered "valuable" or "really valuable" by 86% of respondents and facilitated communication with family members, school, and advocacy organizations. SIGNIFICANCE: The PEOIP serves as a proof of principle that information obtained as part of routine clinical care can be collected in a prospective, standardized, efficient manner and be used to construct filterable process/outcome dashboards, updated in near time (36 hours). This information will provide the necessary baseline data on which multiple of QI projects to improve meaningful outcomes for children with epilepsy will be based.

Social aspects of life in patients with functional seizures: Closing the gap in the biopsychosocial formulation.

The human, as a biological system, is an open system embedded within larger systems -including the family, culture, and socio-political environment. In this context, a patient with functional seizures (FS) is embedded in relationships, educational/professional institutions, culture, and society. Both connection to these broader systems and the quality of these connections, as well as the soundness of each system in and of itself, influence the health and well-being of patients in positive or negative ways. The social aspects of life are important determinants of health and quality of life across the lifespan. The current narrative review brings out several overarching themes in patients with FS. Sections on attachment, marriage, social networking, and stigma highlight the central roles of supportive and affirmative relationships across the lifespan. The section on education underscores the importance of keeping children and youth with FS connected within their school environments, as well as managing any barriers - learning difficulties, school response to FS events, stigma, etc.-that can diminish this connection. Finally, the sections on employment and driving highlight the value of being an active participant in one's society. In summary, FS impacts patients across most social aspects of life domains regardless of age - factors that are important when developing biopsychosocial formulations. This review concludes that the multidisciplinary management of FS requires careful assessment of social aspects of life in patients which can then be targeted for treatment, to improve their quality of life, facilitating recovery, and reducing the risk of relapse.

Psychogenic non-epileptic seizures in children - psychophysiology & dissociative characteristics.

The purpose of this study was to determine psychophysiology and dissociative characteristics of psychogenic non-epileptic seizures (PNES) in a clinical pediatric setting. A retrospective chart review was conducted over a 5-year period that included children meeting criteria for probable, clinically established or documented PNES. Of these, 33 patients (81%) underwent psychophysiology assessment as part of standardized care and were selected for study inclusion. Ages ranged from 10 to 17 years inclusive (70% female). The majority of patients were found to have some form of autonomic decompensation at baseline (82%) and lack of autonomic recovery from a cognitive stressor (58%). Inhibition of electrodermal skin response to laboratory stressor was associated with significantly longer duration of PNES illness (t=2.65, p=.013), while elevated heart rate (above 90th percentile) was associated with significantly higher frequency of PNES events in the month preceding diagnosis (t=3.1, p=.004). High levels of dissociation and hyperventilation symptoms were self-reported by adolescent patients (n=19) with a moderate degree of positive association (r=0.35, p=.038). The majority of patients (n= 25, 89%) were taught to correct respiratory CO2 levels during a single biofeedback training session. Conclusions: Child PNES populations appear to be characterized by chronic autonomic hyperarousal reflecting severity of their symptoms, which can feasibly be targeted for behavioral treatment.

Psychogenic nonepileptic seizures in children-Prospective validation of a clinical care pathway & risk factors for treatment outcome.

PURPOSE: The purpose of this study was to prospectively validate a care pathway for psychogenic nonepileptic seizures (PNES) in a pediatric setting. The pathway was developed based on a previous study of patients at our center, which demonstrated positive treatment outcomes of 80% full or partial remission. Sequentially referred patients with PNES in the validation cohort received care prospectively according to the pathway algorithm. It was hypothesized that the validation cohort would achieve outcomes similar to that of the development cohort as a result of standardized care. METHOD: We performed a retrospective chart review of 43 children sequentially referred, assessed, and treated within a specialized neurology psychology service for suspected PNES over a 5-year period. The majority of patients (n = 41, 95%) met diagnostic criteria for probable, clinically established, or documented PNES, according to the International League Against Epilepsy (ILAE) criteria. RESULTS: Ages ranged from 6 to 18 years of age at time of diagnosis, with the majority of patients being female (n = 29, 67%) and adolescent (n = 31, 72%). There was a high level of adherence to the care algorithm (n = 34, 84%). The development and validation cohorts were similar across demographic, clinical, and psychological characteristics. Standardized care resulted in high rates of full (n = 27, 63%) and partial (n = 12, 28%) remission, as self-reported at discharge. A 96% decrease in mean monthly frequency of total PNES events was also observed at discharge, as was a significant reduction in healthcare utilization related to PNES (74% fewer ambulance calls and 85% fewer emergency department (ED) visits). Post hoc analyses demonstrated that duration of PNES illness longer than 12 months (at diagnosis) increased odds of not achieving full remission by discharge (odds ratio = 5.94, p = 0.02). Developmental period of onset (child versus adolescent), having abnormal electroencephalogram (EEG) result, previous concussion, chronic versus acute stressor, more than one PNES event type, or additional functional neurological symptoms did not significantly impact treatment response. CONCLUSIONS: This study demonstrates, for the first time prospectively in a pediatric setting, that standardized care for PNES leads to improved clinical outcomes and reduced healthcare utilization. Delayed diagnosis and treatment of PNES longer than 12 months also appears to be associated with less favorable outcomes in children.

Clinical characteristics of psychogenic nonepileptic seizures across the lifespan: An international retrospective study.

PURPOSE: Previous studies from a few countries have reported semiological differences in younger children compared with adolescents or adults with psychogenic nonepileptic seizures (PNESs). This study tested the hypothesis that semiological, demographic, and historical risk factors vary with different ages of PNES onset in a large cohort from different countries. METHODS: In this retrospective study, we investigated patients consecutively referred for PNES, who were admitted to epilepsy monitoring units in Iran, Brazil, Venezuela, Canada, Argentina, and USA. Age, gender, age at seizure onset, seizure semiology, and factors predisposing to PNES (abuse, stressors) were documented according to routine diagnostic practices at each center. Participants were grouped according to their age at onset (i.e., childhood, adolescence, or adulthood). RESULTS: A total of 448 patients were studied. Female predominance was associated with adolescent- (85/122, 70%) and adult-onset (190/270, 70%) but not in childhood-onset PNES (28/56, 50%) (p = 0.011). Event frequency in the month preceding the diagnosis was higher in the childhood- [x¯â€¯= 50, standard deviation (sd) = 82, p = 0.025] versus adolescent- (x¯â€¯= 24, sd = 36) or adult-onset groups (x¯â€¯= 29, sd = 61). Significant between-group differences were observed for generalized body movements (p = 0.0001) and ictal injury (p = 0.027), suggesting more severe ictal presentations in adult-onset PNES compared with younger ages. Adult-onset patients were also more likely to be taking an unnecessary antiepileptic medication (p = 0.010). CONCLUSION: While PNES may present at any age, there appear to be notable differences across the lifespan with respect to some of the clinical characteristics. Further international and cross-cultural studies may reveal other interesting characteristics of PNES.

Adult-onset psychogenic nonepileptic seizures: A multicenter international study.

PURPOSE: The aim of this multicenter international cross-cultural study was to compare clinical variables in a large sample of people with adult-onset psychogenic nonepileptic seizures (PNES). METHODS: In this retrospective study, we evaluated persons with documented PNES, who were older than 16 years of age at the onset, from four countries (i.e., Iran, Brazil, Venezuela, and Argentina) regarding their age, gender, PNES semiology, and possible predisposing factors. RESULTS: We included 389 patients (244 from Iran, 66 from Brazil, 51 from Venezuela, and 28 from Argentina). Age at diagnosis was 32 ±â€¯9 years (range: 17-64 years), and age at the onset of seizures was 27 ±â€¯8 years (range: 17-49 years). There was a female predominance in all countries. The demographic characteristics and factors associated with PNES were similar among the countries. However, there were significant semiological differences among the countries. CONCLUSION: This study corroborates the notion that PNES share more similarities than differences cross-culturally and across international borders. However, the background determined by cultural, ethnic, and religious differences may influence the semiology of PNES. Further cross-cultural studies involving more than two continents may advance our understanding of PNES.

Sex differences in demographic and clinical characteristics of psychogenic nonepileptic seizures: A retrospective multicenter international study.

PURPOSE: Sex-related differences have been reported in patients with neurological and psychiatric disorders. It is also plausible to assume that there might be differences between females and males with psychogenic nonepileptic seizures (PNES). METHODS: In this retrospective study, we investigated patients with PNES, who were admitted to the epilepsy monitoring units at centers in Iran, the USA, Canada, Brazil, Argentina, and Venezuela. Age, sex, age at seizure onset, seizure semiology, factors potentially predisposing to PNES, and video-electroencephalography recording of all patients were registered routinely. RESULTS: Four hundred and fifty-one patients had PNES-only and were eligible for inclusion; 305 patients (67.6%) were females. We executed a logistic regression analysis, evaluating significant variables in univariate analyses (i.e., age, age at onset, aura, presence of historical sexual or physical abuse, and family dysfunction). The only variables retaining significance were historical sexual abuse (p = 0.005) and presence of aura (p = 0.01); physical abuse was borderline significant (p = 0.05) (all three were more prevalent among females). CONCLUSION: Similarities between females and males outweigh the differences with regard to the demographic and clinical characteristics of PNES. However, notable differences are that females more often report lifetime adverse experiences (sexual and probably physical abuse) and auras. While social, psychological, and genetic factors may interact with lifetime adverse experiences in the inception of PNES, the link is not yet clear. This is an interesting avenue for future studies.

Pediatric-onset psychogenic nonepileptic seizures: A retrospective international multicenter study.

PURPOSE: We compared various clinical characteristics of pediatric-onset psychogenic nonepileptic seizures (PNES) between patients from five countries. The purpose of this study was to advance our understanding of pediatric-onset PNES cross-culturally. METHODS: In this retrospective study, we compared consecutive patients with PNES with an age at onset of 16 years and younger from epilepsy monitoring units in Iran, Brazil, the USA, Canada, and Venezuela. Age, gender, age at seizure onset, seizure semiology, predisposing factors, and video-EEG recordings of all patients were extracted. Pearson Chi-Square, one-way ANOVA and Bonferroni correction tests were used for statistical analyses. RESULTS: Two hundred twenty-nine patients were studied (83 from Iran, 50 from Brazil, 39 from Canada, 30 from the USA, and 27 from Venezuela). Mean age at the onset of seizures was 12.1 ±â€¯3.2 years (range: 4-16 years). The sex ratio of the patients was 1.83: 1 (148 females and 81 males). Clinical characteristics of pediatric-onset PNES showed some significant differences among the nations. However, factors associated with pediatric-onset PNES in these five nations were similar. CONCLUSION: This study underscores how international cross-cultural studies can make important contributions to our understanding of PNES. Patients with pediatric-onset PNES from different countries were similar on many risk factors associated with PNES. This suggests universality in many features of PNES. However, intriguing differences were also noted with regard to seizure semiology, which might be the result of cultural factors.

Psychogenic nonepileptic seizures in children and adolescents: An international cross-cultural study.

PURPOSE: We compared various clinical characteristics of psychogenic nonepileptic seizures (PNES) between young patients from Iran, Saudi Arabia, and Canada, three nations with significantly different socioeconomic and demographic characteristics. This international cross-cultural comparative study may advance our knowledge and understanding of PNES in children and adolescents across the cultures and borders. METHODS: In this retrospective study, we investigated all patients 16 years of age or younger, with PNES admitted to the epilepsy monitoring units at one center in Iran, one center in Saudi Arabia, and one center in Canada. Age, gender, age at seizure onset, seizure semiology, seizure frequency, factors potentially predisposing to PNES, and video-electroencephalography (EEG) recording of all patients were registered routinely and compared between the nations. RESULTS: Fifty-one patients were studied (22 from Iran, 14 from Saudi Arabia, and 15 from Canada). Age at the diagnosis was 13.4 ±â€¯2.2 years (range: 8-16 years), and age at the onset of seizures was 12.3 ±â€¯2.7 years (range: 5-16 years). Demographic and clinical characteristics of and associated factors in the patients among the three nations were not significantly different. Twenty-six (51%) patients were taking antiepileptic drugs at the time of diagnosis; the difference was not statistically significant between the nations (13 patients in Iran, 6 in Saudi Arabia, and 7 patients in Canada; P = 0.5). CONCLUSION: Young patients with PNES across borders and between cultures share more similarities than differences with regard to their demographic and clinical characteristics.

Experience of psychogenic nonepileptic seizures in the Canadian league against epilepsy: A survey describing current practices by neurologists and epileptologists.

PURPOSE: Psychogenic nonepileptic seizures (PNES) are one of the most common differential diagnoses of epilepsy. Our objective is to describe current medical care in Canada and identify patterns of practice and service gaps. METHODS: In 2015, a 36-question survey was sent via email to the 131 members of the Canadian League Against Epilepsy. The questions were designed after literature review and discussion with the ILAE PNES Task Force. Questions were separated into 5 sections: 1) the role of the respondent and their exposure to PNES, 2) diagnostic methods, 3) management of PNES, 4) etiological factors, and 5) problems accessing health care. RESULTS: Sixty-two questionnaires were analyzed (response rate: 47%). Most respondents were epileptologists (76%). The majority of respondents personally diagnosed PNES and communicated the diagnosis to the patient, but only 55% provided follow-up within their practice and only 50% recommended or arranged treatment. Many (35%) were either unfamiliar with the diagnosis of PNES or inexperienced in arranging or offering treatment. Most (79%) provided follow-up to patients with concomitant epilepsy, but when PNES was the sole diagnosis follow-up rates were low. Although 84% of respondents felt that individualized psychological therapy was the most effective treatment, 40% of patients were not referred to psychotherapy and in most cases availability such therapy was low (30-60%). CONCLUSIONS: Canadian health professionals' understanding of PNES mostly reflects current international expert opinion. Once diagnosis is made however, the majority of patients are discharged from neurological services without appropriate psychological care.

Psychogenic nonepileptic seizures in children - Psychological presentation, treatment, and short-term outcomes.

PURPOSE: The purpose of this study was to better understand the etiologies, features, and care outcomes of psychogenic nonepileptic seizures (PNESs) in a pediatric setting. METHOD: We performed a retrospective analysis of 32 sequentially referred children for suspected PNESs to a neurology psychology service over a 6-year period. After excluding non-PNES paroxysmal events (related to anxiety or migraine), 29 patients were identified with final diagnosis of PNESs. Charts were examined for presenting symptom data, demographics, comorbidities, neurological diagnoses and investigations, as well as psychological assessment, management, and outcome. Treatment consisted of education around diagnosis and of individual psychological treatment, which, in most cases, was cognitive behavioral therapy up to 14 sessions. Additional mental health services including psychiatric medication, family therapy, and admission to day or inpatient treatment were also utilized in a smaller number of cases. Total treatment periods ranged from 4 weeks to 12 months. RESULTS: The majority of patients identified were adolescent (90%), Caucasian (72%), and female (76%). Preceding psychology referral, point of entry into medical care for PNESs was primarily through the emergency department (66%) or outpatient neurology clinic referral (31%). Whereas 39% of parents described significant internalizing symptoms in their child (BASC-2), patients themselves tended to underreport anxiety or depression as demonstrated by only 16% endorsement on the BYI-II. By contrast, MACI personality assessment response patterns for adolescents demonstrated high levels of psychic tension/anxiety (65%), depressive affect (55%), and maladaptive personality traits including inhibition (45%), submissiveness (35%), and introversion (30%). Appropriate psychological treatment was associated with high rates of full remission (no new events, n=17, 59%) and partial remission (50% or greater reduction in events, n=6, 21%) as self-reported at discharge. Accurate diagnosis and referral to psychology also led to a sevenfold reduction in PNES-related emergency department visits one year after initial psychology visit compared with the preceding year. CONCLUSIONS: This study suggests that appropriate care for PNESs reduces inappropriate medical investigation and therapy, expedites rates of remission, and decreases health-care utilization in a pediatric setting.