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1.
Epilepsia ; 62(10): 2322-2332, 2021 10.
Artigo em Inglês | MEDLINE | ID: mdl-34428314

RESUMO

The coronavirus disease 2019 (COVID-19) pandemic has affected the care of all patients around the world. The International League Against Epilepsy (ILAE) COVID-19 and Telemedicine Task Forces examined, through surveys to people with epilepsy (PWE), caregivers, and health care professionals, how the pandemic has affected the well-being, care, and services for PWE. The ILAE included a link on their website whereby PWE and/or their caregivers could fill out a survey (in 11 languages) about the impact of the COVID-19 pandemic, including access to health services and impact on mental health, including the 6-item Kessler Psychological Distress Scale. An anonymous link was also provided whereby health care providers could report cases of new-onset seizures or an exacerbation of seizures in the context of COVID-19. Finally, a separate questionnaire aimed at exploring the utilization of telehealth by health care professionals since the pandemic began was available on the ILAE website and also disseminated to its members. Seventeen case reports were received; data were limited and therefore no firm conclusions could be drawn. Of 590 respondents to the well-being survey (422 PWE, 166 caregivers), 22.8% PWE and 27.5% caregivers reported an increase in seizure frequency, with difficulty in accessing medication and health care professionals reported as barriers to care. Of all respondents, 57.1% PWE and 21.5% caregivers had severe psychological distress (k score >13), which was significantly higher among PWE than caregivers (p<0.01). An increase in telemedicine use during the COVID-19 pandemic was reported by health care professionals, with 40% of consultations conducted by this method. Although 74.9% of health care providers thought that this impacted positively, barriers to care were also identified. As we move forward, there is a need to ensure ongoing support and care for PWE to prevent a parallel pandemic of unmet health care needs.


Assuntos
COVID-19 , Epilepsia/terapia , Pandemias , Cuidadores , Comunicação , Atenção à Saúde/estatística & dados numéricos , Epilepsia/psicologia , Acesso aos Serviços de Saúde , Humanos , Angústia Psicológica , Convulsões/epidemiologia , Estresse Psicológico/etiologia , Estresse Psicológico/psicologia , Inquéritos e Questionários , Telemedicina
2.
Eur J Paediatr Neurol ; 32: 128-135, 2021 May.
Artigo em Inglês | MEDLINE | ID: mdl-33971557

RESUMO

Genetic testing and counselling are increasingly important in epilepsy care, aiming at finding a diagnosis, understanding aetiology and improving treatment and outcome. The psychological impact of genetic counselling from patients' or parents' perspectives is, however, unknown. We studied the counselee-reported outcome of genetic counselling before and after genetic testing for epilepsy by evaluating empowerment - a key outcome goal of counselling reflecting cognitive, decisional and behavioural control, emotional regulation and hope - and anxiety. We asked patients or their parents (for those <16 years or intellectually disabled) referred for genetic testing for epilepsy in two university hospitals between June 2014 and 2017 to complete the same two questionnaires at three timepoints: before and after pre-test counselling and after post-test counselling. Empowerment was measured with the Genetic Counselling Outcome Scale (GCOS-18); anxiety with the short State Trait Anxiety Inventory (STAI-6). A total of 63 participants (55 parents with the age of 29-66 years; 8 patients with the age of 21-42 years) were included in our study. Empowerment significantly increased during the genetic counselling trajectory with a medium effect size (p < 0.001, d = 0.57). A small but significant increase in empowerment was already seen after pre-test counselling (p = 0.038, d = 0.29). Anxiety did not change significantly during the counselling trajectory (p = 0.223, d = -0.24). Our study highlights that patients with epilepsy or their parents show a clinically relevant increase in empowerment after genetic counselling. Empowerment was already increased after pre-test counselling, suggesting the importance of counselling before initiating genetic testing for epilepsy. However, individual differences in changes in empowerment and anxiety were seen, suggesting that counselling could be further improved, based on individual needs.


Assuntos
Ansiedade/psicologia , Epilepsia/psicologia , Aconselhamento Genético/psicologia , Participação do Paciente/psicologia , Adulto , Idoso , Feminino , Testes Genéticos , Humanos , Masculino , Pessoa de Meia-Idade , Pais/psicologia , Participação do Paciente/métodos , Inquéritos e Questionários , Adulto Jovem
3.
CMAJ Open ; 9(2): E563-E569, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34021014

RESUMO

BACKGROUND: Cannabis is legal for recreational and medical use in Canada. Our aim was to explore family experiences using medical cannabis for children with severe conditions in the context of legalization. METHODS: We conducted a qualitative study using semistructured interviews between April and July 2019. Participants were parents of children attending BC Children's Hospital oncology or palliative care clinics, recruited through posters, emails or referral. Participants were included if they spoke English and their child used any type of cannabis for medical purposes. Interviews included open-ended questions about the child's cannabis use. Interviews were recorded and transcribed, and thematic analysis was performed using qualitative description. RESULTS: Ten interviews were completed with 9 mothers and 1 mother-father pair. The age range of the children was 22 months to 16 years. The primary reasons for cannabis use were epilepsy (6 children) or chemotherapy management (4 children). Five major themes were identified. 1) Child and family context, and cannabis as a last resort: children were seen as severely ill; parents sought cannabis out of desperation and responsibility to their child. 2) Varied information sources informed decision-making: parents lacked resources from health care providers and sought support from social media, industry and other families. 3) Cannabis as an ambiguous medicine: cannabis was viewed as both a serious drug that doctors should prescribe and as a natural alternative health product, safe to pursue alone. 4) Perceived effects: parents perceived medical benefits with few concerns about adverse effects. 5) Legal and financial challenges: parents were willing to obtain cannabis despite high costs and uncertain legality. INTERPRETATION: Parents of children with severe conditions pursued medical cannabis despite obstacles and needed unbiased information to access alone. Scientific investigation is needed to develop pediatric medical guidelines to inform decisions.


Assuntos
Epilepsia/tratamento farmacológico , Maconha Medicinal/uso terapêutico , Neoplasias/tratamento farmacológico , Cuidados Paliativos , Pais/psicologia , Percepção Social , Adulto , Atitude Frente a Saúde , Canadá/epidemiologia , Criança , Epilepsia/psicologia , Feminino , Humanos , Masculino , Maconha Medicinal/efeitos adversos , Maconha Medicinal/economia , Neoplasias/psicologia , Cuidados Paliativos/métodos , Cuidados Paliativos/psicologia , Psico-Oncologia/métodos , Pesquisa Qualitativa , Medição de Risco
4.
Epilepsia ; 62(6): 1401-1415, 2021 06.
Artigo em Inglês | MEDLINE | ID: mdl-33951195

RESUMO

OBJECTIVE: This study was undertaken to expand the phenotypic and genetic spectrum of CLCN4-related epilepsy and to investigate genotype-phenotype correlations. METHODS: We systematically reviewed the phenotypic and genetic spectrum of newly diagnosed and previously reported patients with CLCN4-related epilepsy. Three novel variants identified in four patients reported in this study were evaluated through in silico prediction and functional analysis by Western blot, immunofluorescence, and electrophysiological measurements. RESULTS: Epilepsy was diagnosed in 54.55% (24/44) of individuals with CLCN4-related disorders and was drug-resistant in most cases. Of 24 patients, 15 had epileptic encephalopathy and four died at an early age; 69.57% of patients had seizure onset within the first year of life. Myoclonic seizures are the most common seizure type, and 56.25% of patients presented multiple seizure types. Notably, seizure outcome was favorable in individuals with only one seizure type. All patients showed intellectual disability, which was severe in 65.22% of patients. Additional common features included language delay, behavioral disorders, and dysmorphic features. Five patients benefitted from treatment with lamotrigine. Most variants, which were mainly missense (79.17%), were inherited (70.83%). Whereas frameshift, intragenic deletion, or inherited variants were associated with milder phenotypes, missense or de novo variants led to more severe phenotypes. All evaluated CLCN4 variants resulted in loss of function with reduced ClC-4 currents. Nonetheless, genotype-phenotype relationships for CLCN4-related epilepsy are not straightforward, as phenotypic variability was observed in recurrent variants and within single families. SIGNIFICANCE: Pathogenic CLCN4 variants contribute significantly to the genetic etiology of epilepsy. The phenotypic spectrum of CLCN4-related epilepsy includes drug-resistant seizures, cognitive and language impairment, behavioral disorders, and congenital anomalies. Notably, the mutation type and the number of seizure types correlate with the severity of the phenotype, suggesting its use for clinical prognosis. Lamotrigine can be considered a therapeutic option.


Assuntos
Canais de Cloreto/genética , Epilepsia/genética , Epilepsia/psicologia , Adolescente , Adulto , Idoso , Anticonvulsivantes/uso terapêutico , Criança , Transtornos do Comportamento Infantil/etiologia , Pré-Escolar , Deficiências do Desenvolvimento/etiologia , Deficiências do Desenvolvimento/genética , Eletroencefalografia , Epilepsias Mioclônicas/epidemiologia , Epilepsias Mioclônicas/genética , Epilepsia/epidemiologia , Feminino , Mutação da Fase de Leitura , Deleção de Genes , Variação Genética , Genótipo , Humanos , Lamotrigina/uso terapêutico , Transtornos da Linguagem/etiologia , Imageamento por Ressonância Magnética , Masculino , Mutação de Sentido Incorreto , Fenótipo , Convulsões/fisiopatologia
5.
Cochrane Database Syst Rev ; 4: CD010682, 2021 04 16.
Artigo em Inglês | MEDLINE | ID: mdl-33860531

RESUMO

BACKGROUND: Depressive disorders are the most common psychiatric comorbidity in people with epilepsy, affecting around one-third, with a significant negative impact on quality of life. There is concern that people may not be receiving appropriate treatment for their depression because of uncertainty regarding which antidepressant or class works best, and the perceived risk of exacerbating seizures. This review aimed to address these issues, and inform clinical practice and future research. This is an updated version of the original Cochrane Review published in Issue 12, 2014. OBJECTIVES: To evaluate the efficacy and safety of antidepressants in treating depressive symptoms and the effect on seizure recurrence, in people with epilepsy and depression. SEARCH METHODS: For this update, we searched CRS Web, MEDLINE, SCOPUS, PsycINFO, and ClinicalTrials.gov (February 2021). We searched the World Health Organization Clinical Trials Registry in October 2019, but were unable to update it because it was inaccessible. There were no language restrictions. SELECTION CRITERIA: We included randomised controlled trials (RCTs) and prospective non-randomised studies of interventions (NRSIs), investigating children or adults with epilepsy, who were treated with an antidepressant and compared to placebo, comparative antidepressant, psychotherapy, or no treatment for depressive symptoms.  DATA COLLECTION AND ANALYSIS: The primary outcomes were changes in depression scores (proportion with a greater than 50% improvement, mean difference, and proportion who achieved complete remission) and change in seizure frequency (mean difference, proportion with a seizure recurrence, or episode of status epilepticus). Secondary outcomes included the number of participants who withdrew from the study and reasons for withdrawal, quality of life, cognitive functioning, and adverse events. Two review authors independently extracted data for each included study. We then cross-checked the data extraction. We assessed risk of bias using the Cochrane tool for RCTs, and the ROBINS-I for NRSIs. We presented binary outcomes as risk ratios (RRs) with 95% confidence intervals (CIs) or 99% CIs for specific adverse events. We presented continuous outcomes as standardised mean differences (SMDs) with 95% CIs, and mean differences (MDs) with 95% CIs.  MAIN RESULTS: We included 10 studies in the review (four RCTs and six NRSIs), with 626 participants with epilepsy and depression, examining the effects of antidepressants. One RCT was a multi-centre study comparing an antidepressant with cognitive behavioural therapy (CBT). The other three RCTs were single-centre studies comparing an antidepressant with an active control, placebo, or no treatment. The NRSIs reported on outcomes mainly in participants with focal epilepsy before and after treatment for depression with a selective serotonin reuptake inhibitor (SSRI); one NRSI compared SSRIs to CBT.  We rated one RCT at low risk of bias, three RCTs at unclear risk of bias, and all six NRSIs at serious risk of bias. We were unable to conduct any meta-analysis of RCT data due to heterogeneity of treatment comparisons. We judged the certainty of evidence to be moderate to very low across comparisons, because single studies contributed limited outcome data, and because of risk of bias, particularly for NRSIs, which did not adjust for confounding variables. More than 50% improvement in depressive symptoms ranged from 43% to 82% in RCTs, and from 24% to 97% in NRSIs, depending on the antidepressant given. Venlafaxine improved depressive symptoms by more than 50% compared to no treatment (mean difference (MD) -7.59 (95% confidence interval (CI) -11.52 to -3.66; 1 study, 64 participants; low-certainty evidence); the results between other comparisons were inconclusive. Two studies comparing SSRIs to CBT reported inconclusive results for the proportion of participants who achieved complete remission of depressive symptoms.  Seizure frequency data did not suggest an increased risk of seizures with antidepressants compared to control treatments or baseline. Two studies measured quality of life; antidepressants did not appear to improve quality of life over control. No studies reported on cognitive functioning. Two RCTs and one NRSI reported comparative data on adverse events; antidepressants did not appear to increase the severity or number of adverse events compared to controls. The NSRIs reported higher rates of withdrawals due to adverse events than lack of efficacy. Reported adverse events for antidepressants included nausea, dizziness, sedation, headache, gastrointestinal disturbance, insomnia, and sexual dysfunction.  AUTHORS' CONCLUSIONS: Existing evidence on the effectiveness of antidepressants in treating depressive symptoms associated with epilepsy is still very limited. Rates of response to antidepressants were highly variable. There is low certainty evidence from one small RCT (64 participants) that venlafaxine may improve depressive symptoms more than no treatment; this evidence is limited to treatment between 8 and 16 weeks, and does not inform longer-term effects. Moderate to low evidence suggests neither an increase nor exacerbation of seizures with SSRIs.  There are no available comparative data to inform the choice of antidepressant drug or classes of drug for efficacy or safety for treating people with epilepsy and depression. RCTs of antidepressants utilising interventions from other treatment classes besides SSRIs, in large samples of patients with epilepsy and depression, are needed to better inform treatment policy. Future studies should assess interventions across a longer treatment duration to account for delayed onset of action, sustainability of treatment responses, and to provide a better understanding of the impact on seizure control.


Assuntos
Antidepressivos/uso terapêutico , Depressão/tratamento farmacológico , Epilepsia/tratamento farmacológico , Adolescente , Adulto , Antidepressivos/efeitos adversos , Viés , Criança , Terapia Cognitivo-Comportamental , Depressão/etiologia , Epilepsia/induzido quimicamente , Epilepsia/psicologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Ensaios Clínicos Controlados não Aleatórios como Assunto , Estudos Prospectivos , Qualidade de Vida , Ensaios Clínicos Controlados Aleatórios como Assunto , Inibidores de Captação de Serotonina/efeitos adversos , Inibidores de Captação de Serotonina/uso terapêutico , Adulto Jovem
6.
Epilepsia ; 62(6): 1362-1368, 2021 06.
Artigo em Inglês | MEDLINE | ID: mdl-33818779

RESUMO

OBJECTIVE: Observational studies have suggested that increased levels of education and cognition are associated with a reduced risk of epilepsy. However, such associations are easily influenced by confounding or reverse causality. Hence, we conducted a two-sample univariable and multivariable Mendelian randomization (MR) to estimate the total and independent causal effects of educational attainment and cognition on epilepsy risk. METHODS: We performed MR estimates on International League Against Epilepsy (ILAE) Consortium genome-wide association study (GWAS) data (15 212 epilepsy cases and 29 677 controls). We then validated the results in FinnGen (3424 epilepsy cases and 110 963 controls) and applied meta-analysis to all the results. RESULTS: In the meta-analysis of the ILAE and FinnGen results, genetically determined increased educational attainment was associated with a reduced risk of epilepsy (odds ratio [OR] 0.84, 95% confidence interval [CI] 0.80-0.88; P < .001). Similarly, genetically determined increased cognitive function was associated with a reduced risk of epilepsy (OR 0.94, 95% CI 0.88-1.00, P = .043). When educational attainment and cognitive function were included in the same multivariable MR, only educational attainment was still associated with a reduced risk of epilepsy (OR 0.88, 95% CI 0.81-0.95, P = .002). SIGNIFICANCE: This MR study provides evidence to support that increased educational attainment can reduce the risk of developing epilepsy independent of cognitive function.


Assuntos
Cognição , Escolaridade , Epilepsia/prevenção & controle , Epilepsia/psicologia , Causalidade , Estudos de Coortes , Epilepsia/genética , Grupo com Ancestrais do Continente Europeu , Estudo de Associação Genômica Ampla , Humanos , Análise da Randomização Mendeliana , Testes Neuropsicológicos , Polimorfismo de Nucleotídeo Único , Medição de Risco
7.
Epilepsia ; 62(6): 1382-1390, 2021 06.
Artigo em Inglês | MEDLINE | ID: mdl-33856044

RESUMO

OBJECTIVE: Interictal dysphoric disorder (IDD) has been regarded as an affective disorder occurring only in people with epilepsy (PWE). Data showing similar characteristics and similar prevalence of IDD in patients with migraine and with psychogenic nonepileptic seizures question the epilepsy-specific nature of IDD. The aim of the study was to investigate the nature of IDD in people with prevalent epilepsy with mood disorders and people with mood disorders who are free of neurological disease. METHODS: This is a case-control study, with 142 patients with a confirmed diagnosis of epilepsy and major depressive disorder (MDD; cases) and 222 patients with MDD only (controls). MDD diagnosis was confirmed by a structured clinical interview for Diagnostic and Statistical Manual of Mental Disorders, 4th edition (SCID-I-RV). We used the Beck Depression Inventory and the Beck Anxiety Inventory to estimate anxiety and depression levels and the Interictal Dysphoric Disorder Inventory (IDDI) to confirm the presence of IDD. Mann-Whitney U test, Pearson chi-squared, Spearman correlation, and logistic regression were used. RESULTS: No differences were found in the prevalence of IDD between PWE with MDD and people with MDD alone (88.73% vs. 85.13%, χ2 = .96, p = .32). There were no differences between the groups overall or for any IDDI subscales (all p > .05). In both groups, IDD symptoms were grouped with the same incidence and had the same duration and periodicity. IDD was not associated with epilepsy (odds ratio = .84, 95% confidence interval = .40-1.98, p = .72). No significant correlation was found between epilepsy, demographic characteristics, and all IDDI subscales (all p > .05). Notably, patients with IDD suffered from affective disorders longer (6.68 ± 6.82 years vs. 3.7 ± 3.97 years, p = .001) and also received higher scores on all psychometric scales (all p < .05). SIGNIFICANCE: This study does not confirm the specificity of IDD for epilepsy. The presence of IDD symptoms may be associated with a more severe course of MDD and significant anxiety distress.


Assuntos
Epilepsia/complicações , Epilepsia/psicologia , Transtornos do Humor/etiologia , Transtornos do Humor/psicologia , Convulsões/complicações , Convulsões/psicologia , Adolescente , Adulto , Transtornos de Ansiedade/etiologia , Transtornos de Ansiedade/psicologia , Estudos de Casos e Controles , Transtorno Depressivo Maior/complicações , Transtorno Depressivo Maior/psicologia , Manual Diagnóstico e Estatístico de Transtornos Mentais , Feminino , Humanos , Incidência , Masculino , Pessoa de Meia-Idade , Transtornos de Enxaqueca/etiologia , Transtornos de Enxaqueca/psicologia , Transtornos do Humor/epidemiologia , Escalas de Graduação Psiquiátrica , Fatores Socioeconômicos , Adulto Jovem
8.
Epilepsia ; 62(6): 1369-1381, 2021 06.
Artigo em Inglês | MEDLINE | ID: mdl-33878213

RESUMO

OBJECTIVE: Epileptic patients with hypothalamic hamartoma (HH) frequently present cognitive impairments. Surgical techniques aiming at HH can be very efficient for epilepsy relief and cognitive improvement but are also demonstrated to carry a significant risk of additional reduction in memory function in these already disabled patients. Gamma knife radiosurgery (GKS) offers an efficient minimally invasive procedure. We evaluated the effect of stereotactic radiosurgery on cognitive outcome. METHODS: We designed a prospective single-center case series study. Thirty-nine epileptic patients (median age = 17 years, range = 4-50) with HH underwent preoperative and postoperative testing of intelligence quotient (IQ; all patients), including a working memory component, and other memory function testing (for patients ≥16 years old). All patients were prospectively evaluated and underwent complete presurgical and postsurgical clinical, electrophysiological, endocrinal, and visual assessments. In all patients, the postoperative assessment was performed at least 3 years after radiosurgery. We explored what variables correlate with cognitive outcome. Literature review was done for other surgical techniques and their risks for cognitive complications after surgery. RESULTS: No decline was observed in intellectual ability (including working memory) after GKS, and no memory decline was seen in adults. We observed significant improvement (>1 SD in z-score) in working memory index (46%) and processing speed index (35%), as well as improvement in full-scale IQ (24%), verbal comprehension index (11%), perceptual organization index (21%), verbal learning (20%), and visual learning (33%). Before GKS, the probability of seizure cessation was higher in patients with higher cognitive performance. After GKS, the cognitive improvement was significantly higher in the seizure-free patients compared to the non-seizure-free patients. SIGNIFICANCE: We found clear cognitive improvement in a high percentage of patients but importantly no significant decline in intellectual ability (including working memory) and no decline in memory in adult patients 3 years after GKS. GKS compares favorably to the other surgical techniques in terms of cognitive outcome, with similar seizure freedom.


Assuntos
Cognição , Epilepsia/psicologia , Epilepsia/cirurgia , Hamartoma/cirurgia , Doenças Hipotalâmicas/cirurgia , Procedimentos Neurocirúrgicos/efeitos adversos , Procedimentos Neurocirúrgicos/métodos , Radiocirurgia/efeitos adversos , Radiocirurgia/métodos , Adolescente , Adulto , Criança , Pré-Escolar , Epilepsia/etiologia , Feminino , Hamartoma/complicações , Humanos , Doenças Hipotalâmicas/complicações , Testes de Inteligência , Masculino , Memória de Curto Prazo , Pessoa de Meia-Idade , Testes Neuropsicológicos , Período Pós-Operatório , Estudos Prospectivos , Resultado do Tratamento , Escalas de Wechsler , Adulto Jovem
9.
PLoS One ; 16(4): e0249681, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-33798252

RESUMO

Several studies have evidenced inadequate knowledge about epilepsy and inappropriate seizure management, influencing quality of life and social inclusion of patients with epilepsy. Aim of the study was to estimate the knowledge and the attitudes toward epilepsy in schoolteachers and students in Italy. Custom-designed and validated questionnaires in Italian on general and specific knowledge, and social impact of epilepsy have been administered in a random sample of schoolteachers and students. Overall, 667 schoolteachers and 672 students have been included. Among teachers and students, consider epilepsy a psychiatric disorder (16.8% and 26.5%) or an incurable disease (43.9% and 33%). The 47.5% of teachers declared to be unable to manage a seizing student, 55.8% thought it requires specific support and 21.6% reported issues in administer antiseizure medications in school. Healthcare professionals should have an active role in the educational system, dispelling myths, preparing educators and students with appropriate attitudes in the event of a seizure and prevent over limitations in patients with epilepsy. These findings highlight still poor knowledge and attitudes about epilepsy among teachers and students although the 99.4% claimed to have heard/read something about epilepsy. Therefore, improving existing dedicated educational/training interventions could be necessary.


Assuntos
Epilepsia/psicologia , Professores Escolares/psicologia , Estudantes/psicologia , Adulto , Idoso , Gerenciamento Clínico , Docentes , Feminino , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Itália , Conhecimento , Masculino , Pessoa de Meia-Idade , Qualidade de Vida , Instituições Acadêmicas , Convulsões/psicologia , Inquéritos e Questionários
10.
Int J Mol Sci ; 22(8)2021 Apr 14.
Artigo em Inglês | MEDLINE | ID: mdl-33920037

RESUMO

Epilepsy, one of the most common neurological disorders worldwide, is characterized by recurrent seizures and subsequent brain damage. Despite strong evidence supporting a deleterious impact on seizure occurrence and outcome severity, stress is an overlooked component in people with epilepsy. With regard to stressor duration and timing, acute stress can be protective in epileptogenesis, while chronic stress often promotes seizure occurrence in epilepsy patients. Preclinical research suggests that chronic stress promotes neuroinflammation and leads to a depressive state. Depression is the most common psychiatric comorbidity in people with epilepsy, resulting in a poor quality of life. Here, we summarize studies investigating acute and chronic stress as a seizure trigger and an important factor that worsens epilepsy outcomes and psychiatric comorbidities. Mechanistic insight into the impact of stress on epilepsy may create a window of opportunity for future interventions targeting neuroinflammation-related disorders.


Assuntos
Epilepsia/fisiopatologia , Inflamação/fisiopatologia , Convulsões/fisiopatologia , Comorbidade , Epilepsia/epidemiologia , Epilepsia/psicologia , Humanos , Inflamação/epidemiologia , Inflamação/psicologia , Masculino , Qualidade de Vida , Convulsões/epidemiologia , Convulsões/psicologia
12.
Epilepsy Res ; 173: 106625, 2021 07.
Artigo em Inglês | MEDLINE | ID: mdl-33819756

RESUMO

OBJECTIVE: No data exist regarding the impact of the lockdown due to the COVID-19 pandemic on the risk factors of sudden unexpected death in epilepsy (SUDEP). This study aimed to stratify risk factors of SUDEP in relation to COVID-19 lockdown, among patients with epilepsy (PWE) in Cairo University epilepsy unit (CUEU). Therefore, we can detect risk factors and mitigate such factors in the second wave of the virus. METHODS: an observational, cross-sectional study carried on 340 Egyptian patients with active epilepsy. Individual risk identification and stratification was done by using The SUDEP and seizure Safety Checklist, after which sharing risk knowledge to PWE and their caregivers was undertaken. RESULTS: The mean age of patients was 29.72 ± 12.12. The median of the static factors was 4 (IQR 3-5) whereas, the median of the modifiable factors was 2 (IQR 1-3). Epilepsy emergencies (serial seizures or status epilepticus) were reported in 24.1 % of patients, for which non-compliance was the commonest cause, followed by deferral of epilepsy surgery for patients with drug resistant epilepsy (DRE). Stepwise logistic regression analysis showed that use of anxiolytic medications, non-compliance, keeping patients with DRE on dual anti-seizure medications (ASMs), or adding third medication increased the odds of increased seizure frequency by 2.7, 3.5, 16.6 and 6.1 times, respectively. CONCLUSION: Some COVID-19 related issues had influenced the risk of seizure worsening including postponing epilepsy surgery for patients with DRE, non-compliance, and psychiatric comorbidities. Special attention should be paid to these issues to mitigate the risk of SUDEP.


Assuntos
COVID-19/epidemiologia , Pandemias , Morte Súbita Inesperada na Epilepsia/epidemiologia , Adolescente , Adulto , Ansiolíticos/uso terapêutico , Anticonvulsivantes/uso terapêutico , Agendamento de Consultas , COVID-19/psicologia , Lista de Checagem , Estudos Transversais , Egito/epidemiologia , Procedimentos Cirúrgicos Eletivos , Epilepsia/tratamento farmacológico , Epilepsia/psicologia , Epilepsia/cirurgia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Cooperação do Paciente , Medição de Risco , Fatores de Risco , Morte Súbita Inesperada na Epilepsia/prevenção & controle , Centros de Atenção Terciária/estatística & dados numéricos , Tempo para o Tratamento , Adulto Jovem
13.
Acta Neurol Scand ; 144(1): 29-40, 2021 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-33748956

RESUMO

OBJECTIVES: Little is known about the evolution of epilepsy in individuals with tuberous sclerosis complex (TSC) in adulthood. This study aims at describing the characteristics of epilepsy in adult TSC patients attending a single multidisciplinary clinic. MATERIALS AND METHODS: We collected data about epilepsy (age at onset, seizure types, history of infantile spasms (IS), epilepsy diagnosis and outcome), genetic and neuroradiological findings, cognitive outcome and psychiatric comorbidities. RESULTS: Out of 257 adults with TSC, 183 (71.2%) had epilepsy: 121 (67.2%) were drug-resistant; 59 (32.8%) seizure-free, at a median age of 18 years. 22% of the seizure-free patients (13/59) discontinued medication. Median age at seizure onset was 9 months. Seventy-six patients (41.5%) had a history of IS. TSC2 pathogenic variants (p = 0.018), cortical tubers (p < 0.001) and subependymal nodules (SENs) (p < 0.001) were more frequent in those who developed epilepsy. Cognitive functioning was lower (p < 0.001) and psychiatric disorders more frequent (p = 0.001). We did not find significant differences regarding age, gender, mutation and tubers/SENs in seizure-free vs drug-resistant individuals. Intellectual disability (p < 0.001) and psychiatric disorders (p = 0.004) were more common among drug-resistant patients. CONCLUSIONS: Epilepsy in TSC can be a lifelong disorder, but one-third of individuals reach seizure freedom by early adulthood. In the long term, age at epilepsy onset has a crucial role in drug resistance and in developing intellectual disability, both in drug-resistant and drug-sensible patients. Patients with drug-refractory seizures tend to develop psychiatric issues, which should be recognized and adequately treated.


Assuntos
Epilepsia Resistente a Medicamentos/diagnóstico , Epilepsia Resistente a Medicamentos/epidemiologia , Espasmos Infantis/diagnóstico , Espasmos Infantis/epidemiologia , Esclerose Tuberosa/diagnóstico , Esclerose Tuberosa/epidemiologia , Adolescente , Adulto , Criança , Pré-Escolar , Epilepsia Resistente a Medicamentos/psicologia , Epilepsia/diagnóstico , Epilepsia/epidemiologia , Epilepsia/psicologia , Seguimentos , Humanos , Lactente , Deficiência Intelectual/diagnóstico , Deficiência Intelectual/epidemiologia , Deficiência Intelectual/psicologia , Masculino , Estudos Retrospectivos , Espasmos Infantis/psicologia , Esclerose Tuberosa/psicologia
14.
Epileptic Disord ; 23(2): 257-267, 2021 Apr 01.
Artigo em Inglês | MEDLINE | ID: mdl-33772512

RESUMO

OBJECTIVE: This study sought to understand issues facing people with epilepsy (PWE) during the lockdown period of the COVID-19 pandemic in the United States. METHODS: We conducted a cross-sectional study using a 20-question survey that used SeziureTracker.com, sent to eligible PWE and their caregivers on May 6th, 2020. Questions about demographics and medical history were used to calculate COVID mortality risk odds ratios (OR) compared to a low baseline risk group. RESULTS: In total, 505 responses were collected. Of these, 71% reported no change in seizure rates and 25% reported an increase in seizures, which they attributed primarily to disrupted sleep (63%) and decreased exercise (42%). Mortality risks from COVID-19 had median OR of 1.67, ranging 1.00-906.98. Fear about hospitalization (53%) and concern for loved ones (52%) were prominent concerns. Of the respondents, 5% reported stopping or reducing anti-seizure medications due to problems communicating with doctors, access or cost. Lower-risk COVID patients reported more fear of hospitalization (55% versus 38%, p<0.001) and anxiety about medication access (43% versus 28%, p=0.03) compared with higher-risk COVID patients. Increased anxiety was reported in 47%, and increased depression in 28%. Ten percent without generalized convulsions and 8% with did not know anything about epilepsy devices (VNS, RNS, DBS). SIGNIFICANCE: The COVID-19 pandemic presents unique challenges to PWE, including increased seizure rates, problems with access and cost of life-saving medications. Those with lower COVID-19 risk may have been marginalized more than those with higher risk. Efforts to protect PWE during major public health emergencies should take these findings into account.


Assuntos
COVID-19 , Epilepsia/complicações , Pandemias , Quarentena , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Anticonvulsivantes/administração & dosagem , Anticonvulsivantes/uso terapêutico , Cuidadores , Criança , Pré-Escolar , Estudos Transversais , Depressão/epidemiologia , Epilepsia/mortalidade , Epilepsia/psicologia , Medo , Acesso aos Serviços de Saúde , Hospitalização , Humanos , Lactente , Pessoa de Meia-Idade , Fatores de Risco , Convulsões/epidemiologia , Fatores Socioeconômicos , Inquéritos e Questionários , Estados Unidos/epidemiologia , Adulto Jovem
15.
BMC Neurol ; 21(1): 121, 2021 Mar 17.
Artigo em Inglês | MEDLINE | ID: mdl-33731045

RESUMO

BACKGROUND: Apathy in patients with epilepsy is associated with a wide range of consequences that reduce the patient's ability to perform social functions and participate in self-care and rehabilitation programs. Therefore, apathy is one of the important diagnoses of the healthcare team in the process of caring for epileptic patients and its dimensions need to be examined and recognized. Therefore, appropriate instruments with the sociocultural milieu of each community should be provided to health care providers. The aim of the present study was to design and measure epilepsy-related apathy scale (E-RAS) in adults with epilepsy. METHODS: This study of sequential exploratory mixed methods design was conducted in Iran from April 2019 to December 2019. In the Item generation stage, two inductive (face-to-face and semi-structured interviews with 17 adult epileptic patients) and deductive (literature review) were used. In item reduction, integration of qualitative and literature reviews and scale evaluation were accomplished. For Scale Evaluation, face, content, construct [exploratory factor analysis (EFA) (n = 360) and confirmatory factor analysis (CFA) (n = 200)], convergent and divergent Validity and reliability (internal consistency and stability) were investigated. RESULTS: The results of EFA showed that E-RAS has four factors, namely, motivation; self-regulatory; cognition and emotional-effective. These four latent factors accounted for a total of 48.351% of the total variance in the E-RAS construct. The results of CFA showed that the 4-factor model of E-RAS has the highest fit with the data. The results of convergent and divergent validity showed that the values of composite reliability (CR) and average variance extracted (AVE) for the four factors were greater than 0.7 and 0.5, respectively, and the value of AVE for each factor was greater than CR. The Cronbach's alpha coefficient for the whole scale was obtained 0.815. The results of the test-retest showed that there was a significant agreement between the test and retest scores (P < 0.001). CONCLUSION: E-RAS is a multidimensional construct consisting of 24 items, and has acceptable validity and reliability for the study of epilepsy-related apathy in adult epileptic patients.


Assuntos
Apatia , Epilepsia/psicologia , Adulto , Análise Fatorial , Feminino , Humanos , Irã (Geográfico) , Masculino , Pessoa de Meia-Idade , Motivação , Psicometria/métodos , Reprodutibilidade dos Testes , Inquéritos e Questionários
16.
Medicine (Baltimore) ; 100(10): e23571, 2021 Mar 12.
Artigo em Inglês | MEDLINE | ID: mdl-33725809

RESUMO

ABSTRACT: This study investigated the epidemiological status of depression and its influencing factors among caregivers of children with epilepsy in southwestern China.This was a cross-sectional study. Caregivers of children with epilepsy were recruited from February to June 2018 at the Pediatric Neurology Department of the West China Second Hospital. Depression status was assessed using the Zung Self-Rating Depression Scale. Multiple linear regression analysis was used to assess correlations between depression status and its influencing factors.A total of 319 participants were included. The mean Zung Self-Rating Depression Scale score was 36.37 ±â€Š10.178 and 5.3% (17/319) of participants were classified as depressed. Regression analysis showed that place of residence (B = 0.114; standard error = 0.643; P = .039), attitude towards seizures (B = -0.121; standard error = 1.215; P = .029), medical expenses payment (B = -0.111; standard error = 2.002; P = .044), and children's medication adherence (B = -0.124; standard error = 0.393; P = .025) were related to depression.Some caregivers of children with epilepsy in southwestern China experience depression. Health care providers should pay particular attention to caregivers who live in rural areas, who fear seizures, who experience difficulty paying medical expenses, and whose children show low medication adherence.


Assuntos
Cuidadores/estatística & dados numéricos , Depressão/epidemiologia , Epilepsia/terapia , Adolescente , Adulto , Anticonvulsivantes/uso terapêutico , Cuidadores/psicologia , Criança , China/epidemiologia , Estudos Transversais , Depressão/diagnóstico , Depressão/psicologia , Epilepsia/psicologia , Medo/psicologia , Feminino , Humanos , Masculino , Adesão à Medicação/estatística & dados numéricos , Prevalência , Fatores de Risco , População Rural/estatística & dados numéricos , Autorrelato/estatística & dados numéricos
17.
J Pediatr Nurs ; 57: e52-e58, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-33750569

RESUMO

PURPOSE: Epilepsy affects both children and their parents, as it is a chronic disease with recurrent seizures. Parents play a key role in acceptance of the diagnosis of epilepsy by the child and compliance of the child with its treatment. Therefore, the perceptions and experiences of parents about this process are critical. The Epilepsy-Related Fears in Parents Questionnaire is one such instrument, and it has been used to measure the epilepsy-related fear experienced by parents who had children with epilepsy in Germany. This study aimed to analyze the psychometric properties of the Epilepsy-Related Fears in the Parents Questionnaire in Turkey. DESIGN AND METHODS: The study was conducted on 403 parents using a descriptive correlational method. The Sociodemographic Information Form and Epilepsy-Related Fears in Parents Questionnaire were used to gather data. Data analysis and evaluation were performed using factor analysis, Cronbach's alpha, and item-total score correlation. RESULTS: Seventeen items were recorded on the main scale and other items on two subscales. The two subscales recorded a variance of 55.695%. Turkish Cronbach's alpha coefficient recorded a total of 0.929. Because of confirmatory factor analysis, the model fit index results were recorded as follows: 0.94 as the Goodness-of-Fit Index and 0.92 as the Comparative Fit Index. CONCLUSIONS: The study determined that the Turkish version of the Epilepsy-Related Fears in Parents Questionnaire was a valid and reliable measurement tool. PRACTICE IMPLICATIONS: All health professionals can use this scale to evaluate fears of parents who have children diagnosed with epilepsy.


Assuntos
Epilepsia/psicologia , Medo , Pais/psicologia , Psicometria/estatística & dados numéricos , Inquéritos e Questionários/normas , Adulto , Criança , Epilepsia/diagnóstico , Alemanha , Humanos , Reprodutibilidade dos Testes , Turquia
18.
PLoS One ; 16(2): e0247336, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-33621251

RESUMO

BACKGROUND: Epilepsy is thought to be caused by witchcraft, evil spirit, and God's punishment for sins in many developing countries. As a result, people with epilepsy and their families usually suffer from stigma, discrimination, depression, and other psychiatric problems. Thus, this study aimed to assess the quality of life and its associated factors among epileptic patients attending public hospitals in North Wollo Zone, Northeast Ethiopia. METHODS: An institution-based cross-sectional study design was employed in this study. A simple random sampling technique was utilized. Health-related quality of life was measured based on the total score of the Quality of Life in Epilepsy Inventory (QOLIE-31) instrument. Data were entered into Epi-data 3.1 statistical package and exported to SPSS Version 20 for further analysis. Linear regression models were used to assess the relationship between quality of life and the independent variables. Statistically significant values were declared at a P-value of < 0.05. RESULTS: A total of 395 patients participated in the study making the response rate 98.5%. The mean age of the participants was 32.39 ±10.71 years. More than half, 199 (50.4%) of epileptic patients had an overall weighted average health related quality of life score of mean and above. Male sex (B = 4.34, 95%CI, 0.41, 8.27, P = 0.03), higher educational status (B = 7.18, 95%CI, 1.39, 13.00, P = 0.015) and age at onset of epilepsy (B = 0.237, 95%CI, 0.02, 0.45, P = 0.035) were associated with increased health related quality of life score. On the other hand, family history of epilepsy (B = -4.78, 95%CI,-9.24,-0.33, P = 0.035), uncontrolled seizure (B = -11.08, 95%CI,-15.11,-7.05, P < 0.001), more than 5 pre-treatment number of seizures (B = -4.86, 95%CI,-8.91,-0.81, P = 0.019), poor drug adherence (B = -11.65, 95%CI,-16.06,-7.23, P < 0.001), having moderate (B = -4.526, 95%CI,-8.59,-0.46, P = 0.029) to sever (B = -12.84, 95%CI,-18.30,-7.37, P < 0.001) anxiety and depression, believing that epilepsy is caused by evil spirit (B = -7.04, 95%CI,-11.46,-2.61, P = 0.002), drinking alcohol (B = -5.42, 95%CI,-10.72,-0.13, P = 0.045), and having other co-morbidities (B = -9.35, 95%CI,-14.35,-4.36, P < 0.001) were significantly negatively associated with the health related quality of life score among epileptic patients. CONCLUSIONS: Only around half of the epileptic patients have a good health-related quality of life. In addition, multiple variables including family history, uncontrolled seizure, and poor drug adherence were associated with quality of life among epileptic patients. Hence, targeting these variables in epilepsy management is recommended.


Assuntos
Epilepsia/epidemiologia , Qualidade de Vida/psicologia , Adulto , Estudos Transversais , Epilepsia/psicologia , Etiópia/epidemiologia , Feminino , Hospitais Públicos , Humanos , Masculino , Análise de Regressão , Fatores de Risco , Adulto Jovem
19.
Neurosciences (Riyadh) ; 26(1): 56-61, 2021 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-33530044

RESUMO

OBJECTIVES: To explore the influence of epilepsy on quality of life (QoL) among people with epilepsy in Saudi Arabia, and its association with sociodemographic and clinical characteristic aspects in the Qassim region. METHODS: A cross-sectional multi-centered study done in the Qassim region from June 2018 to May 2019. A self-administered questionnaire was provided to 216 participants who attended the neurology clinic. We used a validated Arabic version of the QoL in Epilepsy (QOLIE-31) to measure the QoL. RESULTS: The mean of the overall QOLIE-31 score was 64.23 ± 17.8. we found that employment status had a significant influence on the overall score (p<0.001) and all other QOL domains (rho ranged from -.136 for energy fatigue to -.193 for social function) Patients with focal seizures were significantly higher in emotional wellbeing (rho=-.159), seizure worry (rho=-.226), cognitive function (rho=-.166) and overall score (p=0.010) than patients with the generalized type. Monotherapy patients have higher scores in total (p<0.001) and all subscales except seizure worry and emotional wellbeing than those on polytherapy. CONCLUSION: Employment status, type of seizure, and AED number are the most important factors affecting Saudi patient's QoL.


Assuntos
Anticonvulsivantes/uso terapêutico , Epilepsia/psicologia , Qualidade de Vida/psicologia , Adolescente , Adulto , Estudos Transversais , Emprego , Epilepsia/tratamento farmacológico , Feminino , Humanos , Masculino , Arábia Saudita , Inquéritos e Questionários , Adulto Jovem
20.
BMC Complement Med Ther ; 21(1): 50, 2021 Feb 04.
Artigo em Inglês | MEDLINE | ID: mdl-33541336

RESUMO

BACKGROUND: The aim of this study was to assess the knowledge, attitude, and practice of complementary and alternative medicine (CAM) and its impact on antiepileptic drug (AED) adherence among patients with epilepsy. METHODS: A cross-sectional study was carried out on 100 epilepsy patients, aged 18 years or older that did not have any physical or psychiatric illness. A patient-administered questionnaire was used to assess their knowledge, attitude towards, practice, and perceived effectiveness (KAPP) of CAM. Established adherence assessment tools were used to determine patient medication adherence. RESULTS: The prevalence of CAM usage was found to be at 58%. CAM was used more frequently by males (n = 32, 60.4%) than by females (n = 26, 55.3%; p = 0.609). The most commonly used CAM included vitamins and minerals (36%), ginseng (16%), antioxidants (15%), and acupuncture (12%). A significant number of patients had low knowledge of (59%) and a positive attitude (54%) toward complementary and alternative medicine. Main reasons for using CAM were a lower price, better availability, and inadequate seizure control by AEDs. About 43% of the patients who used CAM informed their doctor. Prevalence of non-adherence to AED therapy was found to be 68%. A significant association was found between non-adherence and CAM usage (p < 0.01). CONCLUSION: A high prevalence of CAM usage and non-adherence to AEDs among epilepsy patients was identified. CAM usage was associated with a non-adherence to AED therapy. This study highlights the need to explore CAM usage with patients before making clinical decisions to achieve the best outcomes from AED therapy.


Assuntos
Anticonvulsivantes/uso terapêutico , Terapias Complementares , Epilepsia/terapia , Adesão à Medicação , Adulto , Idoso , Estudos Transversais , Epilepsia/tratamento farmacológico , Epilepsia/psicologia , Feminino , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Masculino , Adesão à Medicação/psicologia , Pessoa de Meia-Idade , Adulto Jovem
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