A global survey on the attitudes of neurologists and psychiatrists about functional/psychogenic/dissociative/nonepileptic-seizures/attacks, in the search of its name.

PURPOSE: We conducted an observational study to investigate the opinions of neurologists and psychiatrists all around the world who are taking care of patients with seizures [epilepsy and functional seizures (FS)]. METHODS: Practicing neurologists and psychiatrists from around the world were invited to participate in an online survey. On 29th September 2022, an e-mail including a questionnaire was sent to the members of the International Research in Epilepsy (IR-Epil) Consortium. The study was closed on 1st March 2023. The survey, conducted in English, included questions about physicians' opinions about FS and anonymously collected data. RESULTS: In total, 1003 physicians from different regions of the world participated in the study. Both neurologists and psychiatrists identified "seizures" as their preferred term. Overall, the most preferred modifiers for "seizures" were "psychogenic" followed by "functional" by both groups. Most participants (57.9%) considered FS more difficult to treat compared to epilepsy. Both psychological and biological problems were considered as the underlying cause of FS by 61% of the respondents. Psychotherapy was considered the first treatment option for patients with FS (79.9%). CONCLUSION: Our study represents the first large-scale attempt of investigating physicians attitudes and opinions about a condition that is both frequent and clinically important. It shows that there is a broad spectrum of terms used by physicians to refer to FS. It also suggests that the biopsychosocial model has gained its status as a widely used framework to interpret and inform clinical practice on the management of patients.

Physicians' beliefs about brain surgery for drug-resistant epilepsy: A global survey.

PURPOSE: To investigate the opinions of physicians about brain surgery for drug-resistant epilepsy worldwide. METHODS: Practicing neurologists, psychiatrists, and neurosurgeons from around the world were invited to participate in an online survey. The survey anonymously collected data about demographics, years in clinical practice, discipline, nation, work setting, and answers to the questions about beliefs and attitudes about brain surgery for drug-resistant epilepsy. RESULTS: In total, 1410 physicians from 20 countries and different world regions participated. The propensity to discuss brain surgery with patients, who have drug-resistant seizures, was higher among men (versus women) [Odds Ratio (OR) 1.67, 95% CI 1.20-2.31; p = 0.002]. In comparison to neurologists, psychiatrists were less likely (OR 0.28, 95% CI 0.17-0.47; p < 0.001) and neurosurgeons were more likely (OR 2.00, 95% CI 1.08-3.72; p = 0.028) to discuss about it. Survey participants working in Africa, Asia, the Middle East, and the Former Union of Soviet Socialist Republics showed a lower propensity to discuss epilepsy surgery with patients. CONCLUSION: This study showed that on an international level, there is still a knowledge gap concerning epilepsy surgery and much needs to be done to identify and overcome barriers to epilepsy surgery for patients with drug-resistant seizures worldwide.

Counseling about sudden unexpected death in epilepsy (SUDEP): A global survey of neurologists' opinions.

OBJECTIVE: To investigate the opinions and attitudes of neurologists on the counseling about sudden unexpected death in epilepsy (SUDEP) worldwide. METHODS: Practicing neurologists from around the world were invited to participate in an online survey. On February 18th, 2021, we emailed an invitation including a questionnaire (using Google-forms) to the lead neurologists from 50 countries. The survey anonymously collected the demographic data of the participants and answers to the questions about their opinions and attitudes toward counseling about SUDEP. RESULTS: In total, 1123 neurologists from 27 countries participated; 41.5% of the respondents reported they discuss the risk of SUDEP with patients and their care-givers only rarely. Specific subgroups of patients who should especially be told about this condition were considered to be those with poor antiseizure medication (ASM) adherence, frequent tonic-clonic seizures, or with drug-resistant epilepsy. The propensity to tell all patients with epilepsy (PWE) about SUDEP was higher among those with epilepsy fellowship. Having an epilepsy fellowship and working in an academic setting were factors associated with a comfortable discussion about SUDEP. There were significant differences between the world regions. CONCLUSION: Neurologists often do not discuss SUDEP with patients and their care-givers. While the results of this study may not be representative of practitioners in each country, it seems that there is a severe dissociation between the clinical significance of SUDEP and the amount of attention that is devoted to this matter in daily practice by many neurologists around the world.

Use of suggestive seizure manipulation methods in the investigation of patients with possible psychogenic nonepileptic seizures-An international ILAE survey.

Video-encephalographic (vEEG) seizure recordings make essential contributions to the differentiation of epilepsy and psychogenic nonepileptic seizures (PNES). The yield of vEEG examinations can be increased through suggestive seizure manipulation (SSM) (ie, activation/provocation/cessation procedures), but its use has raised ethical concerns. In preparation for guidelines on the investigation of patients with PNES, the ILAE PNES Task Force carried out an international survey to investigate practices of and opinions about SSM. An online questionnaire was developed by the ILAE PNES Task Force. Questions were asked at clinical unit or individual respondent level. All ILAE chapters were encouraged to send questionnaires to their members. The survey was open from July 1, 2019, to August 31, 2019. A total of 487 clinicians from 411 units across 94 countries responded. Some form of SSM was used in 296/411 units (72.0%). Over 90% reported the use of verbal suggestion, over 80% the use of activation procedures also capable of eliciting epileptic activity (hyperventilation or photic stimulation). Only 26.3% of units used techniques specifically intended to provoke PNES (eg, saline injection). Fewer than 10% of units had established protocols for SSM, only 20% of units required written patient consent, in 12.2% of units patients received explicitly false information to provoke seizures. Clinicians using SSM tended to perceive no ethical problems, whereas those not using SSM were likely to have ethical concerns about these methods. We conclude that the use of invasive nocebo techniques intended to provoke PNES in diagnostic settings has declined, but SSM is commonly combined with activation procedures also capable of eliciting epileptic activity. While research suggests that openness about the use of PNES-specific nocebo techniques does not reduce diagnostic yield, very few units have suggestion protocols or seek patient consent. This could be addressed through establishing consensus guidance for the practice of SSM.

Working restrictions and disability benefits eligibility in patients with functional (psychogenic) seizures: An international survey of physicians' opinions.

OBJECTIVES: In this international study, we aimed to investigate the opinions of physicians dealing with patients with functional seizures (FS) worldwide on working restrictions and disability benefits eligibility. METHODS: International online survey of neurologists/mental health professionals from Argentina, Venezuela, Colombia, Italy, France, Iran, Iraq, United Arab Emirates (UAE), Qatar, Saudi Arabia, Georgia, and Russia. RESULTS: Six hundred and twenty-seven physicians from 12 countries participated in the study. Working as a neurologist was a predictor to think that patients with FS should not be counseled to avoid performing all jobs or professions as long as they have active disease (OR: 0.46; 95% CI: 0.30 to 0.68; p < 0.001). Having managed more than 200 patients was associated with the opinion that patients should not be counseled to avoid performing any type of work (OR: 2.17; 95% CI: 1.02 to 4.59; p = 0.043). Working as a psychiatrist/psychologist was associated with the idea that patients with FS should be qualified for disability benefits (OR: 1.97; 95% CI: 1.21-3.21; p = 0.006), and receive these benefits lifelong (OR: 0.43; 95% CI: 0.22-0.84; p = 0.014). CONCLUSION: Neurologists and mental health professionals have different attitudes and opinions toward working restrictions and disability benefits for patients with FS. Further studies should investigate the reasons for these differences, and propose solutions to avoid discrimination and unequal access to employment and disability benefits.

Social aspects of life in patients with functional (psychogenic nonepileptic) seizures: An international study.

PURPOSE: To explore various social aspects of life (i.e., employment, education, and driving) in a large sample of patients with functional seizures (FS) living in seven countries from four continents. METHODS: In this retrospective study, we investigated adult patients with FS, who were admitted to the epilepsy monitoring units at centers in Iran, Qatar, USA, France, Georgia, Egypt, and United Arab Emirates (UAE). We studied the social aspects of life in the whole cohort. Then, we compared the social aspects of life between different world regions. RESULTS: Four hundred and forty patients were included (241 from Iran, 56 from Qatar, 52 from France, 41 from the USA, 19 from UAE, 18 from Egypt, and 13 from Georgia). One hundred and twenty six people (30%) had college education, 142 (33%) were employed, and 101 (28%) drove a motor vehicle in their routine daily lives. People with FS and college education were more likely to report a history of sexual abuse compared with those with a lower education. Patients with no loss of responsiveness with their FS were more likely to be employed. Male patients and patients without aura were more likely to drive a motor vehicle in their routine daily lives. None of the social characteristics of the patients with FS showed significant differences among the two large culturally different groups (Muslim nations vs. Christian nations). CONCLUSION: It appears that patients with FS across cultures have significant problems in their social aspects of life.

Driving a motor vehicle and psychogenic nonepileptic seizures: ILAE Report by the Task Force on Psychogenic Nonepileptic Seizures.

OBJECTIVES: This International League Against Epilepsy (ILAE) Report: (a) summarizes the literature about "driving and psychogenic nonepileptic seizures (PNES)"; (b) presents the views of international experts; and (c) proposes an approach to assessing the ability of persons with PNES (PwPNES) to drive. METHODS: Phase 1: Systematic literature review. Phase 2: Collection of international expert opinion using SurveyMonkey®. Experts included the members of the ILAE PNES Task Force and individuals with relevant publications since 2000. Phase 3: Joint analysis of the findings and refinement of conclusions by all participants using email. As an ILAE Report, the resulting text was reviewed by the Psychiatry Commission, the ILAE Task Force on Driving Guidelines, and Executive Committee. RESULTS: Eight studies identified by the systematic review process failed to provide a firm evidence base for PNES-related driving regulations, but suggest that most health professionals think restrictions are appropriate. Twenty-six experts responded to the survey. Most held the view that decisions about driving privileges should consider individual patient and PNES characteristics and take account of whether permits are sought for private or commercial driving. Most felt that those with active PNES should not be allowed to drive unless certain criteria were met and that PNES should be thought of as "active" if the last psychogenic seizure had occurred within 6 months. SIGNIFICANCE: Recommendations on whether PwPNES can drive should be made at the individual patient level. Until future research has determined the risk of accidents in PwPNES a proposed algorithm may guide decisions about driving advice.

Marital status in patients with functional (psychogenic nonepileptic) seizures: An international study.

PURPOSE: The study aimed to investigate the marital status in a cohort of patients with functional seizures from seven countries in four continents. Factors associated with marital status were also explored. METHODS: Adult patients with functional seizures who were admitted to the epilepsy monitoring units at centers in Iran, Qatar, USA, France, Georgia, Egypt, and United Arab Emirates (UAE) were retrospectively identified. Marital status was assessed in the whole cohort. RESULTS: Four hundred thirty-two patients were included (241 from Iran, 52 from France, 48 from Qatar, 41 from the USA, 19 from UAE, 18 from Egypt, and 13 from Georgia); 302 were women and 130 were men. One hundred fifty (35%) subjects were single, 245 (57%) were married, and 37 (8%) were separated (31 divorced, 7%; 6 widowed, 1%). Auras with functional seizures were less frequently reported by single people in comparison with that by married patients (54% vs. 61%) [odds ratio (OR) = 0.58]. Separated people compared with those who were married less often had auras with their functional seizures (27% vs. 61%; OR = 0.26) and more often reported a history of sexual abuse (49% vs. 12%; OR = 6.14). CONCLUSION: The marital status has significant associations with the semiology of functional seizures. A history of sexual abuse is significantly associated with being separated and should be inquired and tackled appropriately during the management process of patients with functional seizures.

Geographical variation in malignant and benign/borderline brain and CNS tumor incidence: a comparison between a high-income and a middle-income country.

PURPOSE: There is large variability in reported incidence rates of primary brain/CNS tumors across the world, with mostly higher rates in higher-income countries. The aim was to compare malignant and benign brain/CNS tumor incidence between Zurich (Switzerland), a high-income country, and Georgia, a lower middle-income country. METHODS: For the period March 2009 to February 2012, we extracted the following tumors based on topography according to ICD-O3: C70.0-C72.9, and C75.1 (pituitary gland). Data were categorized into histology groups based on the WHO 2007 histological classification. Age-standardized rates per 100,000 person-years were calculated by subgroups. RESULTS: We included 1104 and 1476 cases of primary brain/CNS tumors for Zurich and Georgia, respectively. Mean age of patients was significantly lower in Georgia compared to Zurich (50.0 versus 58.3 years). Overall age-standardized incidence rates for malignant and benign brain/CNS tumors were 10.5 (95% CI 9.9-11.0) for Georgia and 23.3 (95% CI 21.9-24.7) for Zurich with a ratio of benign to malignant tumors of 1.656 for Georgia and 1.946 for Zurich. The most frequent histology types were meningiomas in both regions, followed by glioblastomas in Zurich, but pituitary tumors in Georgia. CONCLUSION: Age-adjusted incidence rates of brain/CNS tumors were considerably higher in Zurich compared to Georgia, both for benign and malignant tumors, which is in line with other studies reporting higher rates in high-income than in low- and middle-income countries. The frequency distribution may be related to differences in diagnosing techniques and the population age structure.

Clinical characteristics of functional (psychogenic nonepileptic) seizures: An international retrospective study.

PURPOSE: We conducted a multicenter international cross-cultural comparative study to investigate clinical semiology and predisposing factors of functional seizures in a large cohort of patients living in different countries around the world. We hypothesized that semiology and predisposing factors of functional seizures differ between various world regions. METHODS: We conducted this retrospective observational study in adults with functional seizures admitted to epilepsy centers in Iran, Qatar, USA, France, Georgia, Egypt, and United Arab Emirates (UAE). We assessed and compared the demographic and clinical seizure characteristics of these patients, according to the patients' reports and review of the ictal recordings during video-electroencephalogram (EEG) monitoring. RESULTS: Five hundred nine patients were included (270 from Iran, 74 from Qatar, 63 from France, 43 from the USA, 22 from Egypt, 20 from UAE, and 17 from Georgia). Although all major manifestations of functional seizures (e.g., aura, loss of responsiveness, generalized motor seizures, ictal injury) were seen in all world regions, seizure semiology differed significantly across countries. Auras, ictal urinary incontinence, and ictal injury were more commonly reported by the American patients than patients from other world regions, whereas loss of responsiveness and generalized motor seizures were more frequently observed in the Iranian and American patients than the European and Arab patients. CONCLUSION: Semiology of functional seizures seems to vary across various regions of the world; socioeconomic, cultural, ethnic, and religious differences may play an essential role in the modulation of functional seizures semiology across different nations and cultures.

The aetiology of psychogenic non-epileptic seizures: risk factors and comorbidities.

Psychogenic non-epileptic seizures (PNES), also known as dissociative seizures, are paroxysms of altered subjective experience, involuntary movements and reduced self-control that can resemble epileptic seizures, but have distinct clinical characteristics and a complex neuropsychiatric aetiology. They are common, accounting for over 10% of seizure emergencies and around 30% of cases in tertiary epilepsy units, but the diagnosis is often missed or delayed. The recently proposed "integrative cognitive model" accommodates current research on experiential, psychological and biological risk factors for the development of PNES, but in view of the considerable heterogeneity of presentations and medical context, it is not certain that a universal model can capture the full range of PNES manifestations. This narrative review addresses key learning objectives of the ILAE curriculum by describing the demographic profile, common risk factors (such as trauma or acute stress) and comorbid disorders (such as other dissociative and functional disorders, post-traumatic stress disorder, depressive and anxiety disorders, personality disorders, comorbid epilepsy, head injury, cognitive and sleep problems, migraine, pain, and asthma). The clinical implications of demographic and aetiological factors for diagnosis and treatment planning are addressed.

Access to diagnostic and therapeutic facilities for psychogenic nonepileptic seizures: An international survey by the ILAE PNES Task Force.

OBJECTIVE: Studies from a small number of countries suggest that patients with psychogenic nonepileptic seizures (PNES) have limited access to diagnostic and treatment services. The PNES Task Force of the International League Against Epilepsy (ILAE) carried out 2 surveys to explore the diagnosis and treatment of PNES around the world. METHODS: A short survey (8 questions) was sent to all 114 chapters of the ILAE. A longer survey (36 questions) was completed by healthcare professionals who see patients with seizures. Questions were separated into 5 sections: professional role, diagnostic methods, management, etiology, and access to health care. RESULTS: Responses were received from 63 different countries. The short survey was completed by 48 ILAE chapters, and the long survey by 1098 health professionals from 28 countries. PNES were recognized as a diagnostic and therapeutic problem in all countries. Trauma and mental health issues were most commonly recognized as etiologic factors. There was a clear relationship between income and access to diagnostic tests and expertise. Psychological therapy was most commonly considered the treatment of choice. Although financial difficulties were the most commonly reported problem with service access in low-income countries, in all countries stigma, lack of popular awareness, and lack of information posed challenges. SIGNIFICANCE: This global provider survey demonstrates that PNES are a health problem around the world. Health care for PNES could be improved with better education of healthcare professionals, the development of reliable and simple diagnostic procedures that do not rely on costly tests, and the provision of accessible information.

PNES around the world: Where we are now and how we can close the diagnosis and treatment gaps-an ILAE PNES Task Force report.

An international consensus clinical practice statement issued in 2011 ranked psychogenic nonepileptic seizures (PNES) among the top three neuropsychiatric problems. An ILAE PNES Task Force was founded and initially charged with summarizing the current state of the art in terms of diagnosis and treatment, resulting in two publications. The first described different levels of diagnostic certainty. The second summarized current knowledge of management approaches. The present paper summarizes an international workshop of the ILAE PNES Task Force that focused on the current understanding and management of PNES around the world. We initially provide a knowledge update about the etiology, epidemiology, and prognosis of PNES-in adults and in special patient groups, such as children, older adults, and those with intellectual disability. We then explore clinical management pathways and obstacles to optimal care for this disorder around the world by focusing on a number of countries with different cultural backgrounds and at very different stages of social and economic development (United Kingdom, U.S.A., Zambia, Georgia, China, and Japan). Although evidence-based methods for the diagnosis and treatment of PNES have now been described, and much is known about the biopsychosocial underpinnings of this disorder, this paper describes gaps in care (not only in less developed countries) that result in patients with PNES not having adequate access to healthcare provisions. A range of challenges requiring solutions tailored to different healthcare systems emerges. Continued attention to PNES by the ILAE and other national and international neurologic, psychiatric, and health organizations, along with ongoing international collaboration, should ensure that patients with PNES do not lose out as healthcare services evolve around the world.

Incidence rates of the primary brain tumours in Georgia--a population-based study.

BACKGROUND: To determine the incidence rate and to describe other basic epidemiological data of primary brain tumours in a population-based study in Georgia, performed between March 2009 and March 2011. METHODS: Active case ascertainment was used to identify brain tumour cases by searching neuroradiology scan reports and medical records from all participating medical institutions, covering almost 100% of the neurooncology patients in the country. RESULTS: A total of 980 new cases were identified during the two-year period. For a population of almost 4.5 million, the overall annual incidence rate was 10.62 per 100,000 person-years, age-standardized to the year 2000 US population (ASR). Non-malignant tumours constituted about 65.5% of all tumours. Males accounted for 44% and females for 56% of the cases. Among classified tumours, age-standardized incidence rates by histology were highest for meningiomas (2.65/100,000), pituitary adenoma (1.23/100,000) and glioblastomas (0.51/100,000). ASR were higher among females than males for all primary brain tumours (10.35 vs. 9.48/100,000) as well as for main histology groups except for neuroepithelial, lymphomas and germ cell tumours. CONCLUSIONS: The annual incidence rate of all primary brain tumours in Georgia, though comparable with some European registry data, is low in comparison with the 2004-2005 Central Brain Tumor Registry of the United States (CBTRUS) database, which may reflect variations in reporting and methodology. The higher percentage of unclassified tumours (37.8%) probably also affects the discrepancies between our and CBTRUS findings. However, the most frequently reported tumour was meningioma with a significant predominance in females, which is consistent with CBTRUS data.

Primary brain tumour epidemiology in Georgia: first-year results of a population-based study.

A population-based cohort study was initiated in Georgia in March 2009 to collect epidemiologic data of malignant and non-malignant primary brain tumours. During the first year, 473 incident cases were identified. For a population of 4.3 million, the annual incidence rate was 10.25 per 100,000 inhabitants, age-standardized to the year 2000 US population. Non-malignant tumours constituted about 66 % of all tumours. Males accounted for 40 % and females for 60 % of the cases. Crude incidence rates by histology were highest for meningiomas (2.92/100,000), pituitary adenoma (1.16/100,000) and glioblastomas (0.64/100,000), which was in agreement with the frequency of reported histology: meningiomas--45.2 %, pituitary adenoma--18.0 % and glioblastomas--9.9 %. The age-standardized incidence rates were higher among females than males for all primary brain tumours (11.05 vs. 8.44/100,000) as well as for individual histologies except for glioblastoma and several other neuroepithelial tumours. Some differences compared with 2004-2005 Central Brain Tumor Registry of the United States data may be explained by a higher percentage of unclassified tumours (37 %) in our study. We suggest further studies to clarify the nature of this discrepancy.