Responses of people with epilepsy to the COVID-19 pandemic in the time of national lockdown.

The aim of our study was to gather information on how people with epilepsy (PwE) responded to the COVID-19 pandemic during the national lockdown. An online questionnaire was therefore offered to the visitors of the Croatian Association for Epilepsy's website. The 22-items questionnaire was designed to acquire information from adults with epilepsy living in Croatia on demographic data, cognitive, emotional and behavioral responses to the pandemic, and communication problems between patients and their neurologists during the lockdown. Perceived anxiety and fears were expressed with the Likert scale (1-5) and the results of specific fears added to make the Total Fear Score. Results: Out of 186 respondents in total, only 2.8% did not comply with the lockdown measures, and all of those respondents stated that they did not feel any anxiety related to COVID-19. A canceled neurologist examination during the lockdown was significantly associated with pandemic-related anxiety (2.9 ±â€¯1.28 vs. 2.3 ±â€¯1.19, U = 3039, p = 0.001) and fears (Total Fear Score 31.4 ±â€¯9.70 vs. 28.4 ±â€¯9.79, U = 3341, p = 0.036), and 87.4% of respondents expressed the wish to communicate with their neurologist, either by phone/video call (53.0%) or email (34.4%). Conclusion: We think the results of our survey show that the responses from PwE point to a social responsibility appropriate for the existing situation. During future pandemics, telemedicine could have an important role in tackling the fears and anxieties caused by the cancelation of examinations, which corresponds to the wishes expressed by the great majority of our respondents.

Fragmentary myoclonus in idiopathic rapid eye movement sleep behaviour disorder.

Fragmentary myoclonus is a result of muscle activity consisting of brief potentials in surface electromyography during polysomnography. Excessive fragmentary myoclonus is defined by increased intensity of the potentials. A few studies report excessive fragmentary myoclonus occurrence in neurodegenerative diseases. Because idiopathic rapid eye movement sleep behaviour disorder is considered as an early stage of neurodegeneration with involvement of the brainstem, we charted the prevalence and quantified the intensity of excessive fragmentary myoclonus in idiopathic rapid eye movement sleep behaviour disorder. Twenty-nine patients (one woman, 28 men, mean age 68 years, SD 6.2) and 29 controls (two women, 27 men, mean age 65.6 years, SD 8.6) underwent polysomnography. Fragmentary myoclonus potentials were identified and counted according to internationally used criteria. Fragmentary myoclonus intensity was quantified by the fragmentary myoclonus index. Excessive fragmentary myoclonus was diagnosed in 75.9% (22 subjects) in idiopathic rapid eye movement sleep behaviour disorder, while in 34.5% (10 subjects) among the controls (p = 0.003). Quantitative analysis showed a wide-range fragmentary myoclonus index in idiopathic rapid eye movement sleep behaviour disorder (4.0-632.4; median 60.7) and in the controls (0.8-938.1; median 34.3). The overall difference in fragmentary myoclonus index was not significant between the groups; however, patients with idiopathic rapid eye movement sleep behaviour disorder showed trends for higher fragmentary myoclonus index scores in wakefulness (p = 0.027), N1 (p = 0.032), N3 (p = 0.046) and R (p = 0.007). Fragmentary myoclonus index does not correlate with age, idiopathic rapid eye movement sleep behaviour disorder duration or R stage atonia deficiency. The prevalence of excessive fragmentary myoclonus is higher in idiopathic rapid eye movement sleep behaviour disorder compared with the controls, so fragmentary myoclonus should be taken into account in future research of rapid eye movement sleep behaviour disorder and motor control in sleep.

Labels and epilepsy - An online survey of patients and those close to them.

Publications on the topic of appropriate labels for someone with diagnosed epilepsy have so far almost exclusively consisted of views of professionals in this field. We conducted an online study of patients treated for epilepsy and persons close to them with the aim of identifying which label they prefer, whether they oppose the term "epileptic", and which characteristics are related with their preferences. In total, 328 responses were analyzed. Subjects mostly favored "person-first" terminology ("person having epilepsy" and "person with epilepsy"), and 53.9% disapproved of the term "epileptic". Parents of patients are more likely than patients themselves to favor the label "person having epilepsy" and to disapprove of the label "epileptic". These results can help with shaping future terminology recommendations.

Women with epilepsy in childbearing age: Pregnancy-related knowledge, information sources, and antiepileptic drugs.

Pregnancy-related issues in epilepsy (PRIE) are essential for management of epilepsy in women. We conducted a study among women with epilepsy (WWE) aged 15-45years about their knowledge, sources, and needs for information regarding PRIE, which included their current antiepileptic drugs (AEDs) usage. Women with epilepsy, visitors of Croatian Association for Epilepsy webpage, were offered an online questionnaire, and 200 responses were analyzed. The mean number of correct answers about PRIE was 3.5 out of 5. Main predictors of knowledge on PRIE were a prior consultation with a neurologist and higher usage of books/brochures. A prior neurologist consultation on PRIE was stated by 45% of subjects. As the preferred future mode of being informed on PRIE, majority of women (61%) chooses their neurologist, 22% written materials distributed by a neurologist, and only 13% Internet. Levetiracetam was the most commonly used AED (34.5%). Valproate was used by 26%, and of those 59% stated no previous consultation on PRIE with their neurologist. In summary, we believe our study shows that knowledge of PRIE among WWE in their childbearing age is unsatisfactory, as are the neurologist consultation rates about PRIE. Our results demonstrate that, despite modern technologies, educational activities should be based on neurologist consultations and providing the patients with appropriate written materials. This is especially true for the relatively large proportion of women still taking valproate.

Simultaneous tonic and phasic REM sleep without atonia best predicts early phenoconversion to neurodegenerative disease in idiopathic REM sleep behavior disorder.

STUDY OBJECTIVES: Rapid eye movement (REM) sleep without atonia (RWA) is the main polysomnographic feature of idiopathic REM sleep behavior disorder (iRBD) and is considered to be a promising biomarker predicting conversion to manifested synucleinopathy. Besides conventionally evaluated tonic, phasic and any RWA, we took into consideration also periods, when phasic and tonic RWA appeared simultaneously and we called this activity "mixed RWA." The study aimed to evaluate different types of RWA, to reveal the most relevant biomarker to the conversion. METHODS: A total of 55 patients with confirmed iRBD were recruited with mean follow-up duration 2.3 ± 0.7 years. Scoring of RWA was based on Sleep Innsbruck Barcelona rules. Positive phenocoversion was ascertained according to standard diagnostic criteria during follow-up. Receiver operator characteristic analysis was applied to evaluate predictive performance of different RWA types. RESULTS: A total of nine patients (16%) developed neurodegenerative diseases. Yearly phenoconversion rate was 5.5%. Significantly higher amounts of mixed (p = 0.009), tonic (p = 0.020), and any RWA (p = 0.049) were found in converters. Optimal cutoffs differentiating the prediction were 16.4% (sensitivity 88.9; specificity 69.6) for tonic, 4.4% (sensitivity 88.9; specificity 60.9) for mixed, and 36.8% (sensitivity 77.8; specificity 65.2) for any RWA. With area under the curve (AUC) 0.778, mixed RWA has proven to be the best predictive test followed by tonic (AUC 0.749) and any (AUC 0.710). CONCLUSIONS: Mixed, tonic and any RWA may serve as biomarkers predicting the conversion into neurodegenerative disease in iRBD. The best predictive value lies within mixed RWA, thus it should be considered as standard biomarker.

Online epilepsy counseling in Croatia: What do users want to know?

PURPOSE: The purpose of this study is to better understand which specific epilepsy-related issues are cause for seeking out professional advice online. METHOD: An online epilepsy counseling service introduced by the Croatian Epilepsy Association allows users to anonymously submit questions related to epilepsy via e-mail or online contact form, which are later answered by an epilepsy professional. The questions were classified both by inquirers and by content. Inquirers were classified as patients, patient's parents, family members, partners, and friends of patients with epilepsy. In terms of content, questions were divided into three groups: medical, socially-oriented, and unclassifiable questions. RESULTS: In sum, 355 e-mails, which included 513 questions, were analyzed. The vast majority of inquirers were patients themselves (48%) and parents of patients (28%). While 76% of questions concerned the medical aspects of epilepsy, there was as well significant interest in administrative and practical issues associated with the diagnosis of epilepsy. Among medical questions, the most popular concerned prognosis (15%) and second opinions (14%); among socially-oriented questions, inquirers were primarily interested in matters associated with their profession (28%). As well, the parents of patients were more likely to question an epilepsy diagnosis than the patients themselves (p<0.001). CONCLUSION: According to the results of this study, it is clear that epilepsy professionals should invest more time in discussing with patients the topics which interest them the most, as well as refer them to other professionals that can help them with non-medical epilepsy-related issues, and advise them on reliable Internet sources.

How does the label "epileptic" influence attitudes toward epilepsy?

PURPOSE: The purpose of our research was to study the possible differences in attitudes toward epilepsy based on the label used: "person"/"child with epilepsy" vs. "epileptic"/"epileptic child". METHODS: Two randomly assigned groups of college-preparatory high school students were questioned using anonymous questionnaires about their demographics, knowledge on epilepsy and attitudes toward epilepsy. Attitudes were measured using three general attitude questions and a six item modified version of the Bogardus social distance scale. Two versions of the questionnaire were identical except for the term "person"/"child with epilepsy" in first group (group A) being replaced with the term "epileptic"/"epileptic child" in the second one (group B). Mann-Whitney test was used to compare attitude scores between groups. RESULTS: There were 425 subjects in total, 208 in group A and 217 in group B. The results on the Social distance scale indicated significantly more negative attitudes in group B (p=0.008). Subjects in group B also expressed more negative attitudes than those in group A when asked about sharing a room with a person with epilepsy (p=0.005) and marrying a person with epilepsy, either themselves (p=0.033) or when the person getting married is someone close to them (p=0.024). CONCLUSION: In conclusion, using term "epileptic" can evoke more negative attitudes toward a person with epilepsy and this seems to be especially true for more intimate life domains (cohabitation or marriage), while in more impersonal domains (such as communicating and working with a person with epilepsy), no significant influence of the label on attitudes was proven.

Bilateral subclavian steal syndrome in an intensive care unit. A case report.

We report the case of a 56-year-old man who presented with arterial hypotension, lightheadedness, vomiting, a sense of tingling in his right arm, and a right-beating horizontal nystagmus. He was initially admitted to the Intensive care unit and treated with standard vasopressor agents. A neurosonological examination showed the steal phenomenon on both vertebral arteries; the neuroradiological examination revealed occlusion of the left subclavian artery and subtotal stenosis of the innominate artery. Percutaneous transluminal angioplasty was performed. Our case demonstrates how bilateral subclavian steal syndrome should be taken into account in the case of a seemingly hypotensive patient unresponsive to standard therapy.

Factors associated with perceived stigma of epilepsy in Croatia: a study using the revised Epilepsy Stigma Scale.

PURPOSE: It is believed that a large number of factors influence feelings of stigma, but their relative contribution is not yet entirely clear. Most studies to date were conducted using the Epilepsy Stigma Scale (ESS); only one used a revised version of the ESS (rESS). The following study aims to determine factors contributing to epilepsy stigma in outpatients with chronic epilepsy in Croatia, and to analyze some psychometric properties of the Croatian translation of the rESS. METHODS: Alongside standard testing for validity of the scale, a simulation model of the original ESS (smESS) was created. This model, which does not include a grading Likert 0-3 scale, was compared with the rESS. RESULTS: In total, 159 out of 298 subjects (53%) reported feeling stigmatised, with 136 (45%) mild to moderately and 23 (8%) highly. Internal consistency of the Croatian translation of the rESS was 0.887. Feelings of stigma were significantly associated with age ≤ 50 years, younger age of epilepsy onset, more than 50 seizures to date, generalized tonic-clonic seizures, and a shorter seizure-free period. Multiple stepwise regression showed number of seizures to date as a significant variable (Beta=0.246). By adapting data into the smESS significant associations with younger age and age of epilepsy onset were lost. Internal consistency of the smESS was 0.849. CONCLUSIONS: The Croatian translation of the rESS has been proved to be a suitable instrument for diagnosing epilepsy stigma. The results of our model point to the possibility that the rESS might be more sensitive than the original ESS.