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To study breastfeeding initiation and continuation rates and identify clinical predictors of breastfeeding initiation related to maternal epilepsy and the newborn's condition among women with epilepsy (WWE).Data on a cohort of 1195 pregnant WWE from an epilepsy center in Poland from 2000 to 2019 were prospectively collected. Mann-Whitney U and ch2 tests -based comparisons between lactating and non-lactating WWE according to age, week of delivery, Apgar score, birth weight, type of epilepsy, seizure control, major congenital malformation (MCM), mode of delivery, type and dose of antiseizure medication (ASM) were performed. A logistic regression model was constructed to identify predictors of breastfeeding initiation.Among 921 WWE, who gave birth to a living child, 709 (77%) initiated breastfeeding. The annual rate did not significantly change over the study period. Higher breastfeeding initiation rates were associated with vaginal birth (OR = 0.66) and lack of MCM (OR = 0.23). Breastfeeding initiation was less frequent with old-generation ASM monotherapy (OR = 0.36) or polytherapy (OR = 0.33) compared to no ASM treatment. The rate of breastfeeding initiation was positively associated with gestational week and the newborn's condition. At 6 months, about 1/3 of WWE maintained lactation.Approximately ¾ of the WWE cohort initiated breastfeeding. Breastfeeding initiation was associated with delivery mode, treatment type, and the newborn's condition but was not associated with seizures during pregnancy or the individual ASM dose. Further studies are needed to identify additional factors that may negatively affect breastfeeding.

Background Cohen syndrome (Q87.8;ORPHA:193; OMIM#216550) is an autosomal recessive inherited genetic disorder caused by mutation in the VPS13B/COH1 gene. It is characterized by variable clinical symptoms such as deformity of the head, face, hands and feet, eye abnormalities, abdominal obesity, neutropenia and nonprogressive intellectual disability. The typical lesions in the eyeball in Cohen syndrome include high myopia, retinal dystrophy, strabismus, maculopathy and lens subluxation. The present study describes the coexistence of bilateral macular edema with pale optic disc in a patient with a homozygous deletion in the VPS13B/COH1 gene. Material and methods A 6-year-old Caucasian girl with facial dysmorphism, microcephaly, prominent upper incisors, narrow hands with slender fingers, congenital heart defect and ophthalmic symptoms was subjected to genetic testing. The genetic evaluation revealed a homozygous deletion on the long arm of chromosome 8 encompassing 20–25 exons of the VPS13 gene, as confirmed by Cohen syndrome. She underwent a full ophthalmological examination with the assessment of slit lamp examination of anterior segment and fundoscopy, refraction error, biometry, central corneal thickness and additionally electroretinography, optical coherence tomography and fundus photography. Results In the ophthalmologic examination, the girl had bilateral astigmatism accompanied by myopia and a marked reduction in central corneal thickness. Fundus examination showed pale optic nerve discs and “salt and pepper” retinopathy. Bilateral cystic macular edema was revealed in handheld optical coherence tomography. Electroretinography showed a reduced response amplitude of cones and rods. Conclusion In a patient with high myopia, macular edema, pale optic disc and facial dysmorphism, Cohen syndrome should be considered in the differential diagnosis. The severity of individual clinical features in patients with Cohen syndrome varies. It can be assumed that the type of mutation affects the occurrence and severity of individual symptoms.

Introduction: Epilepsy affects nearly 50 million people around the world. As a common and chronic disease generates a high cost burden for healthcare system and patients. Aim: We aimed to determine the most current direct and indirect costs of epilepsy in Poland from the social perspective for the years 2014–2018, to analyze the changes of expenditures over time, indicate trends and to determine key cost-drivers. Material and Methods: Direct and indirect costs using a top-down approach were estimated based on the public institutions' data for the ICD-10 codes G40 and G41. Direct costs included pharmacotherapy, hospitalizations, outpatient specialist care and rehabilitation. A human capital approach was used to estimate loss of productivity due to sick leaves and long-term inability to work. Results: Annual total direct and indirect costs related to epilepsy accounted for EUR 410 million in 2014 and decreased in subsequent years to EUR 361 million in 2018. The indirect costs were dominant (76–83% of total costs) and in the majority related to the long-term absenteeism (87–92% of total indirect costs). In 2014–2018, patients with epilepsy generated EUR 341 million to EUR 282 million of indirect costs. Annual direct costs for patients with epilepsy were EUR 69 million in 2014 and increased to EUR 80 million in 2018. The biggest expenses were the costs of drugs (> 50%) and hospitalizations (~ 40%). Conclusions: Epilepsy is an expensive disorder in terms of consumption of resources and social costs. Decision-makers should take it under special consideration.

Introduction: Spinal muscular atrophy (SMA) is one of the most frequent autosomal recessive neuromuscular disorders. It leads to progressive muscle weakness, premature death or permanent ventilation. Significant disability, scoliosis, severe pulmonary infections and other problems require in- and outpatient medical care. Various approaches have been used to evaluate SMA epidemiology, healthcare burden and adherence to standard of care. The recent introduction of pharmacological treatment in a large SMA population will change the course of the disease and the healthcare requirements of patients. Material and methods: We have used the National Health Fund database to identify children with SMA and the healthcare service they received in the pre-pharmacological treatment era. Pivotal phase II and III medical trials for nusinersen were conducted between 2013 and 2015. The National Treatment Programme of SMA patients with nusinersen in our country was started in January 2019. The year 2014 was used to evaluate incident cases. Results: 51 new SMA cases (incidence 1:7,356) and 518 SMA patients younger than 18 were identified in 2014. 32 (6.2%) deaths were recorded, half in the first two years of life. 35 (6.8%) patients received palliative and 115 (22.2%) long-term care (including assisted ventilation). A total number of 3,057 days of hospital stay were reported. Only 65/518 (12.6%) patients did not receive publicly-funded healthcare service other than specialist or general practitioner’s consultation. Conclusions: SMA caused significant mortality and morbidity in children. The National Health Fund database can be used to reliably record incident cases and track the care provided to paediatric SMA patients.

Data from literature suggest that the rate of caesarean section (CS) in women with epilepsy (WWE) is higher than in the general population. In Poland, there is neither a national registry nor another data set to access the outcome of pregnancy in WWE. Therefore, we address this gap by prospectively studying CS rates among 1021 WWE pregnancies at a single centre, their trends over time, and factors increasing the likelihood of the CS. To determine whether the diagnosis of epilepsy itself increased this likelihood, mixed models were used to analyse the contributions of specific variables, including the presence of seizures at different pregnancy-related timepoints. Over 20 years, the mean rate of CS in WWE was progressively growing and was higher than in the general population in Mazovia (47% vs. 32%). Generalized seizures in the third trimester increased the likelihood of CS with the highest odds (OR 4.4). The most frequent indication for a CS was obstetric (58.1%), followed by epilepsy-related (25.2%). Almost half of women who indicated epilepsy as the sole reason for CS had no seizure during pregnancy, and nearly 70% did not have generalized seizures. This suggests the overuse of epilepsy as an indication of CS and encourages defining more strict criteria.

Objectives: The resection of an epileptic focus provides a chance for seizure outcome regression, which markedly influences the level of patients' quality of life. One of its dimensions is the satisfaction with one's sexual life. Patients with epilepsy usually report low sexual satisfaction due to commonly diagnosed disturbances of sexual functions characterized by a multifactorial etiology. The aim of the study was to assess the level of satisfaction with their sexual life in patients after the surgical resection of an epileptic focus. Patients and methods: The study group included 63 patients who had undergone the surgical resection of an epileptic focus in a neurosurgical ward. The study was conducted with the present authors' own tool consisting of three parts. Result: The patients assessed their sexual life as moderately satisfactory (the average score was 4 out of a 7-grade scale). 38% of the respondents reported a complete withdrawal from sexual life, sporadic sexual activity or masturbatory behavior (instead of interactive behavior). This type of behavior correlates with the reduction in sexual satisfaction. Higher satisfaction is associated with initiating new behavior which is adequate to the patient's health status, more frequent sexual contacts or no changes between behavior before and after the surgery. Moreover, the removal of an epileptic focus reduced the fear of a possible seizure during intercourse. Conclusion: Based on the findings it may be assumed that the sexual satisfaction of patients with epilepsy after the resection of an epileptogenic focus is markedly affected by psychological factors, which should be considered in the therapeutic process. Keywords: Epilepsy, Sexual satisfaction, Epileptic focus resection, Quality of life

OBJECTIVE: To assess the resources available in the provision of epilepsy care across Europe and the developments since the International League Against Epilepsy (ILAE) survey published in 2003 (data collected in 2000)., METHODS: An updated online version of the European Epilepsy Services Inventory was distributed to all European chapters of the ILAE (N = 47) and responses were obtained from 33 chapters (response rate 70%). To assess trends and allow comparisons with the survey published in 2003, the responding countries were divided into 4 groups (Western, Central, Southern, and Eastern). Responses from European Union (EU) member states are reported as a subgroup (N = 23), since the current survey is a part of the EU‐funded European Study on the Burden and Care of Epilepsy (ESBACE, www.esbace.eu)., RESULTS: The total number of physicians involved in epilepsy care had increased since 2000, with the largest increase seen for neurologists. The gap between the best‐ and the least‐provided areas with regard to the competence of the providers had diminished. However, the density of comprehensive multidisciplinary epilepsy teams had not changed to any greater degree. The main problems reported by the chapters were to a large extent the same as in 2000 and included lack of specialists and specialist care, lack or underuse of epilepsy surgery, and problems regarding financing and resource allocation. Several chapters also highlighted problems with healthcare structure and organization., SIGNIFICANCE: Although there have been some improvements concerning the availability of care for people with epilepsy in Europe over the last 17 years, there are still a number of problem areas with little improvement or where there are important regional differences., European Union (Directorate General for Health and Food safety), Grant/Award Number: 2014/1/1995648, peer-reviewed

Introduction The Working Group was established at the initiative of the General Board of the Polish Society of Epileptology (PSE) to develop an expert position on the treatment of convulsive status epilepticus (SE) in adults and children in Poland. Generalized convulsive SE is the most common form and also represents the greatest threat to life, highlighting the importance of the choice of appropriate therapeutic treatment. Aim of guideline We present the therapeutic options separately for treatment during the early preclinical (>5–30 min), established (30–60 min), and refractory (>60 min) SE phases. This division is based on time and response to AEDs, and indicates a practical approach based on pathophysiological data. Results Benzodiazepines (BZD) are the first-line drugs. In cases of ineffective first-line treatment and persistence of the seizure, the use of second-line treatment: phenytoin, valproic acid or phenobarbital is required. SE that persists after the administration of benzodiazepines and phenytoin or another second-line AED at appropriate doses is defined as refractory and drug resistant and requires treatment in the intensive care unit (ICU). EEG monitoring is essential during therapy at this stage. Anesthesia is typically continued for an initial period of 24 h followed by a slow reversal and is re-established if seizures recur. Anesthesia is usually administered either to the level of the “burst suppression pattern” or to obtain the “EEG suppression” pattern. Conclusions Experts agree that close and early cooperation with a neurologist and anesthetist aiming to reduce the risk of pharmacoresistant cases is an extremely important factor in the treatment of patients with SE. This report has educational, practical and organizational aspects, outlining a standard plan for SE management in Poland that will improve therapeutic efficacy.

Purpose The aim of this survey was to review and compare the current approaches to epilepsy management in Central and Eastern EU (CEEU) countries. Method The questionnaire was sent to ten invited experts from Bulgaria, Czech Republic, Estonia, Hungary, Latvia, Lithuania, Poland, Romania, Slovakia, and Slovenia. It focused on the treatment of adults. Results The number of neurologists and epilepsy reference centers is highly variable in CEEU countries. None of the analyzed states has a formal specialization in epileptology. No universal state-approved criteria for reference centers exist in Czech Republic, Estonia, Hungary, Latvia, and Slovenia. Generally, the protocols for epilepsy treatment in CEEU countries, including drug-resistant epilepsy, are in accordance with international guidelines; however, most countries have their own national standards of care and some have local clinical guidelines. Also, the reimbursement systems for antiepileptic drugs in CEEU countries are highly variable. Seven countries have epilepsy surgery centers. The costs of epilepsy surgeries are fully reimbursed, procedures performed abroad may also be covered. The length of time spent on waiting lists for surgery following the completion of preoperative investigations varies from two weeks to three years. The fraction of patients who qualified and were operated on within 12 months ranges from 20% to 100%. Conclusion The lack of unified procedures pertaining to the evaluation and therapy of epilepsy is reflected by marked differences in access to treatment modalities for patients from CEEU countries.

PurposeUse of concomitant medicines (CMs) is a common practice in people with epilepsy, as comorbidity in this group is frequent. Comedication, especially if it is self-administered, may pose significant hazards due to potential interactions. Some attention has been given to use of CMs in older patients with epilepsy but the CM habits of younger patients are much less known. The purpose of this study was to determine annual frequency of use, kind and cost of CMs in patients with epilepsy.Material and methodsThe 12-month prospective multicentre study included 772 patients with a mean age of 27.4 yrs and a mean epilepsy duration of 12.5 yrs. Data on patient characteristics and treatment were collected during consecutive five visits. All CMs were classified according to the ATC system.ResultsOf the 772 patients, 472 (61.1%) used at least one CM (3.4 drug/patient). OTC drugs constituted nearly 2/3 of all CMs. More women then men took CMs (p

Despite significant advances in epileptology, the differential diagnosis of epileptic and pseudoepileptic seizures continues to be a considerable challenge. The problem becomes even more complicated when epileptic and psychogenic pseudoepileptic seizures coexist in the same patient . Appropriate psychological measures may be helpful in the diagnosis and may improve knowledge about aetiological factors which can provoke psychogenic pseudoepileptic seizures. The purpose of this paper is to present the psychological profile of patients with mixed seizures (epileptic and psychogenic pseudoepileptic) developed on the basis of the Minnesota Multiphasic Personality Inventory (MMPI) and to discuss the personality differences between patients with psychogenic epileptic seizures and epileptic patients. In patients with diagnosed epilepsy and/or suspected psychogenic pseudoepileptic seizures long-term video-monitoring was performed. On the basis of the gathered data the patients were divided into three groups: group I (N= 32 : 25 F and 7 M) had coexistent psychogenic pseudoepileptic and epileptic seizures, group II (N= 38 : 30 F and 8 M) had psychogenic pseudoepileptic seizures only and group III (N= 36 : 18 F and 8 M) had epileptic seizures only and was treated as the control group. All three groups were given the MMPI. Comparison of the averaged personality profiles of the three groups revealed significant differences (P< 0.0001) in hypochondriasis (Hs) and hysteria (Hy), similarity of the profiles of groups I and II, and significantly higher Hs and Hy scores than D (Depression) scores (P< 0.001). Unlike groups I and II, group III (the epileptic group) had significantly higher D scores than Hs and Hy scores (P< 0.01). Our findings suggest that conversion, manifested in the typically elevated Hs and Hy scores as compared to D scores, is present in both groups of patients demonstrating pseudoepileptic seizures but absent in the patients with epilepsy where the Hs and Hy to D ratio is reversed. Patients with mixed seizures and patients with psychogenic pseudoepileptic seizures only have similarly shaped profiles.

Epileptic seizures have been known from time immemorial. Throughout the ages, however, ideas concerning the aetiology and treatment of epilepsy have changed considerably. Epilepsy is mentioned many times in the Pentateuch, where it is portrayed as a mysterious condition, whose symptoms, course and contingencies evade rational laws and explanations. In the Middle Ages, the accepted view which prevailed in social consciousness was that patients with epilepsy were possessed by Satan and other impure spirits. One common method of treatment of epileptic seizures was to submit the patient to cruel exorcisms. Patients were frequently injured in the process and some of them even died. Our understanding of epilepsy and its social consequences has improved considerably within the last century. The most significant progress as far as diagnosis and treatment of epilepsy is concerned took place in the last four decades of the twentieth century. Although we now know much more about epilepsy than we used to, this knowledge is still insufficiently popularized.

Objective Finding and continuing employment are among the most important issues for patients with epilepsy (PWE). Earlier studies indicated overrepresentation of PWE in manual unskilled or semiskilled positions. Methods The questionnaire-based study was carried out throughout Poland between February and March 2009. 995 PWE (18–65 yrs), 179 neurologists, and a representative sample of the Polish population over 15 yrs of age (1042) were included. Results 49% of PWE were employed. Patients with epilepsy most commonly work as service and sales workers, office workers, professionals, and technicians. 56% of Poles, 25% of patients, and 28% of neurologists believed that all PWE could work. Conclusions Almost 3/4 of PWE held non-manual positions. This contradicts the stereotype of unskilled professions being more suitable for PWE. Generally, Poles have a positive attitude towards employment of PWE, but the lack of knowledge about the condition makes them less prudent than neurologists and the PWE themselves.

Clinicians who work with patients with epilepsy are confronted with many diagnostic and therapeutic challenges when have to differentiate between epileptic and psychogenic nonepileptic seizures (PNES). At the end of the twentieth century, the introduction of electroencephalography (EEG) recording with simultaneous monitoring of patient behaviour helped to correct false positive and false negative diagnoses of the nature of convulsive conditions. This technological advancement sensitized physicians to the high incidence of patients with PNES receiving referrals to clinical centres specializing in the treatment of epilepsy. When PNES is erroneously diagnosed as epilepsy, patients are at risk of prolonged, unnecessary, and above all, ineffective treatment with antiepileptic drugs. These drugs do not reduce the number of psychogenic convulsive incidents. Moreover , ineffective treatment leads to frequent visits to outpatient clinics and hospitalizations. It also leads to frequent change of doctors, strategies and forms of treatments. All this increases the cost of erroneous diagnosis and inadequate treatment.

Despite the substantial prevalence of psychogenic disorders (from 50% to 70% of patients who report to physicians of various specialities are treated for psychogenic, functional disorders), these disorders continue to be relatively poorly understood (Hamilton et al., 1996; Mace & Trimble, 1996). Psychogenic nonepileptic seizures (PNES) are one variety of psychogenic disorders. PNES are sudden changes in behaviour, usually of limited duration, which imitate an epileptic attack, but are not accompanied by EEG changes occurring during a genuine epileptic attack.

Purpose Symptoms of depression are present in 40 to 60 percent of patients with epilepsy. Prior research indicated significant correlation between the incidence and frequency of focal seizures and clinical depression, especially in patients with temporal lobe epilepsy. Anticonvulsive drugs and psychosocial factors contribute to the occurrence of depression as well. The aim of the study was to determine the major depression risk factors in patients with epilepsy. Methods The research was conducted on 203 patients with epilepsy (117 females and 86 males), aged 18 to 50 years, with total time of illness ranging from 60 to 580 months. All subjects underwent the same research protocol, which was applied interictally. Interictal depression was diagnosed according to ICD-10 diagnostic criteria for affective and delusional disorders. The diagnosis was supported by Beck Depression Inventory (BDI), Hamilton Depression Rating Scale (HAM-D) and Montgomery-Asberg Depression Rating Scale (MADRS). Statistical analysis included χ 2 test, Fisher’s exact test and stepwise logical regression model analysis. Results In our study 100 patients with epilepsy out of 203 suffered from concurrent depression (49.2%); 76 of them had severe depression (37.4%) and 24 patients had mild depression (11.8%). Complex partial seizures and absence of secondary generalized tonic–clonic seizures were found to be the risk factors for depression. Treatment with clonazepam, frequent hospitalizations (drug-resistancy) and lack of occupational activity were revealed to be additional significant contributing factors. Conclusions Depression in patients with epilepsy is a serious medical and social problem since it afflicts almost one half of all patients treated in epilepsy referral centers. It seems to be correlated with certain types of epileptic seizures, with high frequency of seizures, sub-optimal pharmacologic treatment and lack of occupational and social activity.

Because vigabatrin (VGB) is not metabolized by liver enzymes and does not bind with serum proteins, there is little theoretical chance of it interacting with other antiepileptic drugs. However, our observations have shown that if VGB is added to carbamazepine (CBZ) monotherapy, some patients respond with adverse, toxic symptoms suggesting possible carbamazepine-vigabatrin interaction. This article presents the results of a study of 66 epileptic patients (27 women and 39 men), age 10-66 years (mean, 28.2 years), with focal seizure onset with or without secondary generalization. In these patients, in addition to CBZ therapy with an average dose of 16.7 mg/kg per day (8.6-26.8), VGB, average dose 31.1 mg/kg per day (7.1-57.9), was added. CBZ concentration was measured twice: prior to VGB introduction and 5-12 weeks after the final dose of VGB was reached. In our study 69.7% of patients responded to VGB addition with a significant increase (by at least 10%) in CBZ concentration. A correlation between the value of the increase and the initial level of CBZ prior to VGB addition was found also. Correlational analysis (Pearson's r) revealed a negative correlation between CBZ concentration and increased concentration after VGB addition (r = -0.47, df = 64, P0.001). This negative correlation means that if the initial CBZ level is lower, its concentration value after VGB addition is higher.

Measures of interpersonal relations of non-epileptic patients to epileptic patients were studied in search of answers to two questions: what is the initial attitude of non-epileptic patients to epileptic patients; and, do any changes in attitude occur during time spent together in hospital? In order to study these personal relations, a formal analysis of preferences was carried out. Twenty-two non-epileptic patients admitted to the Neurology and Epileptology Department, Medical Centre for Postgraduate Education, Warsaw were studied. Subjects were asked to rank-order (from 1 to 9 points) suggested ways of distributing the profits of a hypothetical joint (e.g., with a room-mate) money-earning venture. The experimental procedure for each patient was repeated for all three room-mates. Preferences were assessed three times - the day after admission to hospital, after 11 days and after 21 days in hospital. Following this procedure, it was possible to trace the dynamics of the patients' interpersonal relations. The data were correlated (Spearman's r(s)) and submitted to analysis of variance (MANOVA) with repeated measures. Analysis of the attitudes of patients with non-epileptic neurological disorders towards epileptic patients revealed a dynamic tendency - from negative (measures one and partly two) to positive attitudes after three weeks spent together in hospital (measure three).