RESUMO
OBJECTIVE: Epilepsy is a neurological disorder characterized by recurrent seizures, exhibiting variance in prevalence and treatment availability across diverse geopolitical contexts and cultural milieus. The stigma associated with epilepsy is a significant global issue affecting the quality of life (QOL) of people with epilepsy (PWE). This study aims to examine the relationship between self-stigma and depressive symptoms in PWE, with a particular emphasis on understanding the manifestations of these across different cultural contexts. We aim to enhance the provision of customized care to diverse cultural settings, fostering the adoption of healthier lifestyles for PWE. METHODS: We recruited PWE who received treatment at specialized medical facilities for epilepsy in Japan, Malaysia (Chinese, Malay), and Turkey from February to October 2023. The Epilepsy Self-Stigma Scales (ESSS), Neurological Disorders Depression Inventory for Epilepsy (NDDI-E), and Generalized Anxiety Disorder 7 (GAD-7) in local languages were used to assess self-stigma, depressive symptoms, and anxiety. RESULTS: The ESSS total scores were significantly higher among the Turkish and Japanese cohorts (F [3, 406] = 6.57, p < 0.001, η2 = 0.05). In addition, the self-stigma observed moderate positive correlations for depressive symptoms (rs = 0.41-0.50, Ps < 0.001) and anxiety (rs = 0.42-0.44, Ps < 0.001). The ANCOVA findings suggested that the notable variations in self-stigma, as found in the one-way ANOVA conducted across four cultures, were reduced when taking into consideration depressed symptoms. Our finding highlights the potential influence of mental health factors over cultural factors concerning self-stigma. SIGNIFICANCE: The manifestation of self-stigmatization within epilepsy exhibits distinctions across diverse cultural cohorts, regardless of the demographic and clinical variation, yet demonstrates a significant correlation with psychological factors. In subsequent research endeavors, we should comprehensively investigate these subtle differences, their potential impact on patient care, and the development of supportive approaches. PLAIN LANGUAGE SUMMARY: This cross-cultural study reveals significant variations in self-stigma among people with epilepsy across different cultural contexts, with Turkish and Japanese cohorts showing higher levels. Self-stigma demonstrated moderate positive correlations with depressive symptoms and anxiety across all cultures. Notably, differences in self-stigma were reduced when accounting for depressive symptoms, suggesting that mental health factors may have a stronger influence than cultural factors. These findings underscore the importance of considering both cultural and psychological aspects in developing targeted interventions to address self-stigma in epilepsy care.
RESUMO
Objective: This study sought to translate the Caveness questions (CQs), initially formulated in the United States for assessing attitudes toward people with epilepsy (PWE), into Japanese. Concurrently, the study examined the translated instrument's psychometric properties, specifically the usefulness within Japan's cultural and linguistic context. Methods: We crafted the Japanese version of CQs-J by drawing upon the original English and German versions. Subsequently, On May 22nd and 23rd, 2023, we administered an online questionnaire survey to the general public registered with the online research survey service (Cross Marketing Group Inc., Tokyo, Japan). Inclusion criteria comprised an age of ≥18 years, processing proficient reading and speaking skills in Japanese, and demonstrating the ability to comprehend the Japanese questionnaires. In addition, we included questions about age, gender, education levels, employment status, and any experiences with epilepsy. Results: A cohort comprising 400 ordinary people processing prior exposure to information regarding epilepsy participated in the study. Participants provided informed consent before proceeding to complete the study questionnaire. The CQs-J, encompassing following four items.CQ1) Would you object to having any of your children in school or at play associate with persons who sometimes had seizures (fits)?CQ2) Do you think epilepsy is a form of insanity or not?CQ3) Do you think epileptics should or should not be employed in jobs like other people?CQ4) Would you object to having a son or daughter of yours marry a person who sometimes has seizures (fits)?We compared CQs-J groups with negative or positive attitudes towards epilepsy, taking into account age, gender, employment status, education levels, and knowledge and experiences of the condition. Those who responded to the CQ1 question that they would object to their child's occasional association with someone at school or at play who has seizures (fits) were significantly more negative in their experiences with epilepsy: they did not understand what to do during seizures (Ex3, p < 0.01), and they did not believe in the effectiveness of epilepsy treatment (Ex4, p < 0.01). In addition, males were significantly more likely to respond that epilepsy is insanity when asked the CQ2 question (p < 0.001). Additionally, in CQ3, do you think people with epilepsy should have the same access to jobs as other people with epilepsy? Significant differences were found for younger age, a lower overall Epilepsy Knowledge Scale score (p < 0.001), being employed (p = 0.028), Ex3 (p = 0.041), and Ex4 (p < 0.01). Finally, older people were significantly more opposed to marrying someone who has seizures in CQ4 (p < 0.001) or is not working, and others were also significantly more opposed (p = 0.030). Significance: We evaluated the utility of the Japanese version of the CQs, demonstrating its effectiveness for assessing treatment strategies in stigma reduction and enabling cross-cultural comparisons of attitudes towards epilepsy. In large-scale social surveys, the CQs-J scale effectively captures broad attitudes toward epilepsy with a limited number of items and offers the advantage of ease of use for longitudinal studies, such as tracking changes in attitudes over time. Furthermore, we expect the CQs-J results to facilitate in-depth cross-cultural comparisons of attitudes toward epilepsy by comparing them across different cultures.
RESUMO
OBJECTIVES: People with epilepsy (PWE) continue to suffer from discrimination and often bear the negative attitudes surrounding this condition. The aim of the study was to assess the frequency of perceived stigma and factors associated with it among PWE in tertiary care centre. MATERIAL AND METHODS: A hospital-based, cross-sectional study was conducted using the Kilifi Stigma Scale of Epilepsy (KSSE) to assess the stigma associated with epilepsy and factors related to stigma. RESULTS: A total of 260 consecutive PWE were recruited, with a mean age of 28.12±9.96 years. The majority of subjects had primarily or secondarily generalized seizures (85â¯%), and most of PWE don't know the cause of epilepsy (79.2â¯%) and feel that epilepsy is a contagious disease. Those with contagious beliefs felt more stigma (27.7â¯%). Stigma was perceived by 28.5â¯% of subjects using KSSE. Stigma was more perceived in those who had primarily or secondarily generalized seizures (23.9â¯%) and longer durations of anti-seizure medication (ASM) (24.4â¯%). Injury during a seizure was reported in 30â¯% of subjects and were more stigmatized (p<.01). CONCLUSION: Perceived stigma in PWE was found to be correlated with contagious beliefs. There is a need for awareness and educational programs by healthcare professionals at different levels to support and encourage positive beliefs, dispel myths about epilepsy, and inform PWEs of the fact that it is not a contagious disease.
Assuntos
Epilepsia , Estigma Social , Humanos , Masculino , Feminino , Adulto , Estudos Transversais , Epilepsia/psicologia , Adulto Jovem , Pessoa de Meia-Idade , Adolescente , Inquéritos e Questionários , Conhecimentos, Atitudes e Prática em SaúdeRESUMO
BACKGROUND: Epilepsy is a global health and economic burden with major problems that have an impact on physical, psychological, and social activities. Quality of life (QoL) is often disturbed and can be influenced by many factors, like anti-seizure medication side effects, the sociocultural environment, and various disease-related factors. The aim of this systematic review and meta-analysis is to provide an overview of the most recent information available regarding the pooled prevalence of poor quality of life and associated factors among adult people with epilepsy in Ethiopia. METHODS: The Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) is an appropriate set of guidelines for reporting systematic reviews and meta-analyses. This systematic review and meta-analysis protocol was registered on the International Prospective Register of Systematic Reviews (PROSPERO) with CRD42024527914. To find publications for the systematic review and meta-analysis, we used both manual and electronic searches. The publications were searched by PubMed, MEDLINE, EMBASE, Cochrane Library, Scopus, and other grey publications were searched by Google Scholar. The Joanna Briggs Institute (JBI) for cross-sectional study quality assessment was employed to evaluate the methodological quality of the studies included in this review. The data was extracted in Microsoft Excel, and then it was exported into STATA 11.0 for analysis. A funnel plot and an objective examination of Egger's regression test were used to check for publication bias. RESULTS: We have included 7 studies conducted in Ethiopia with 2123 study participants, of whom 1163 (54.78%) were male individuals, and 1196 (56.34%) of the participants were living without marriage (either single, divorced, or widowed). The pooled prevalence of poor quality of life among people with epilepsy in Ethiopia is 45.07 (95% CI: 39.73-50.42%). Further, in subgroup analysis regarding the assessment tool of poor quality of life of people with epilepsy, QOLIE-31 accounted for 50.05% (95%CI: 46.65-53.45) and WHO QOL BREF accounted for 39.72% (95%CI: 27.67-51.78). Among the associated factors, being unable to read and write, anxiey and depression were significantly linked to the quality of life of people with epilepsy. CONCLUSION: This review found that there was a high pooled prevalence of poor quality of life related to people with epilepsy in Ethiopia. This study may provide further information to concerned bodies that do early screening and manage the quality of life of individuals with epilepsy. Also, screening and intervention for anxiety and depression problems should be considered in regular epilepsy care management.
Assuntos
Epilepsia , Qualidade de Vida , Humanos , Etiópia/epidemiologia , Epilepsia/psicologia , Epilepsia/epidemiologia , Adulto , PrevalênciaRESUMO
INTRODUCTION: The COVID-19 pandemic has affected the lives of people with epilepsy (PWE) in various ways. This systematic review and meta-analysis aims to assess the mental health status and prevalence of mental disorders including depression, anxiety, stress, and psychological distress among PWE. Furthermore, this study evaluates changes in sleep patterns and presence of sleep disturbances among them. The findings of this systematic review can help health organizations, policymakers, and health workers to better prepare and respond to future health crises for PWE and other chronic disease patients. METHOD: This systematic review was prepared using PRISMA reporting guidelines. We systematically searched PubMed, Web of Science, Scopus and Cochrane Library databases for studies that reported data on mental health parameters including depression, anxiety, stress, psychological distress, quality of life, and sleep quality, during the pandemic until May 2023. The analytical procedures were executed through the utilization of Comprehensive Meta-Analysis (CMA) software. RESULTS: In our study, a total of 61 carefully selected studies were analyzed, yielding valuable insights into the prevalence and impact of various mental health indicators among PWE. The findings revealed that a significant proportion of PWE experienced distressing psychological symptoms, with depression being reported by 34% of participants. Additionally, anxiety was prevalent among 43% of individuals, while stress symptoms were reported by 49% of respondents. Moreover, a substantial portion of PWE, approximately 38%, reported experiencing poor sleep quality, further underscoring the multifaceted nature of the challenges faced by this population. These findings highlight the need for targeted interventions and comprehensive support systems to address the mental health concerns and sleep disturbances faced by individuals living with epilepsy. CONCLUSION: The findings revealed that a substantial number of PWE experience symptoms of depression, anxiety, stress, and poor sleep quality. These results emphasize the importance of considering mental health and sleep assessments as integral components of care for individuals with epilepsy. The study underscores the need for further research and targeted interventions to address the mental health burden faced by this population. By prioritizing and addressing these challenges, healthcare providers can enhance the overall well-being and quality of life for individuals living with epilepsy.
Assuntos
Ansiedade , COVID-19 , Depressão , Epilepsia , Saúde Mental , Qualidade de Vida , Humanos , COVID-19/psicologia , COVID-19/epidemiologia , Epilepsia/psicologia , Epilepsia/epidemiologia , Depressão/epidemiologia , Depressão/psicologia , Ansiedade/epidemiologia , Ansiedade/psicologia , Transtornos do Sono-Vigília/epidemiologia , Transtornos do Sono-Vigília/psicologia , Estresse Psicológico/epidemiologia , Estresse Psicológico/psicologia , Transtornos Mentais/epidemiologia , Transtornos Mentais/psicologiaRESUMO
OBJECTIVE: This study investigates the prevalent issues of healthcare access and the impact of antiseizure treatments among people with epilepsy (PWE) in rural Limpopo and Mpumalanga, South Africa, where healthcare facilities and affordable treatments are often inadequate. METHODS: Using a cross-sectional survey, 162 PWE were selected using multistage sampling across the provinces. Data were collected via a structured questionnaire and analyzed descriptively using SPSS v27. RESULTS: Most of the participants experienced seizures intermittently, with 70.6% in Limpopo and 53.3% in Mpumalanga reporting occasional episodes, whereas a significant minority in both regions-20.6% and 40%, respectively-suffered from frequent seizures. A notable portion of PWE also reported recurring side effects from antiseizure drugs, which led to consequential life disruptions, including educational dropout and unemployment. SIGNIFICANCE: The findings underscore an urgent need for enhanced educational programs and increased awareness to improve the understanding and management of epilepsy in these underserved areas. Optimizing care for PWE requires a multifaceted approach, including evaluating healthcare accessibility, affordability, and societal beliefs influencing treatment adherence. The study advocates for government and policy interventions to mitigate the quality of life deterioration caused by epilepsy and its treatment in rural communities. PLAIN LANGUAGE SUMMARY: In Limpopo and Mpumalanga, many individuals with epilepsy experience seizures occasionally, while a significant minority have them frequently. Numerous people also suffer recurring side effects from antiseizure medications, impacting their lives severely by causing school dropouts and job losses. This underscores the urgent need for improved education and awareness programs to manage epilepsy in these provinces effectively. The study urges government action and policy reforms to enhance care and support for people with epilepsy in rural areas, aiming to improve their quality of life.
Assuntos
Epilepsia , Acessibilidade aos Serviços de Saúde , População Rural , Humanos , Epilepsia/tratamento farmacológico , África do Sul , Feminino , Estudos Transversais , Adulto , Masculino , Pessoa de Meia-Idade , Adulto Jovem , Adolescente , Qualidade de Vida , Anticonvulsivantes/uso terapêutico , Inquéritos e QuestionáriosRESUMO
Jordan and Palestine are tightly related countries as the same families live in the two adjacent countries. The present study sought to examine the prevalence and determinants of Post-Traumatic Stress Disorder (PTSD)symptoms, insomnia, and fatigue among a cohort of People with Epilepsy (PWE) in Jordan. This is a cross-sectional study with inclusion criteria. PTSD, insomnia, and fatigue were assessed using validated scales. Data were analyzed from 109 PWE, PTSD symptoms were screened in (35.5 %), and Insomnia was screened in 51.8 %, moreover, fatigue mean score ± SD was 44.64 ± 26.96. PTSD symptoms were significantly associated with "females" and "age above 30 years" Insomnia severity was associated with "females". Also, the regression results demonstrated that "abstinence from social media" was significantly related to lower insomnia severity. Higher fatigue severity was associated with "married" and "Generalized Tonic-Clonic Seizures", whereas, lower fatigue severity was associated with "males", and with "levetiracetam". Our findings indicate the need for actions to alleviate mental health deterioration in PWE.
Assuntos
Epilepsia , Fadiga , Distúrbios do Início e da Manutenção do Sono , Transtornos de Estresse Pós-Traumáticos , Humanos , Jordânia/epidemiologia , Masculino , Feminino , Epilepsia/epidemiologia , Epilepsia/psicologia , Epilepsia/complicações , Adulto , Prevalência , Fadiga/epidemiologia , Fadiga/etiologia , Fadiga/psicologia , Distúrbios do Início e da Manutenção do Sono/epidemiologia , Distúrbios do Início e da Manutenção do Sono/psicologia , Pessoa de Meia-Idade , Transtornos de Estresse Pós-Traumáticos/epidemiologia , Estudos Transversais , Adulto Jovem , GuerraRESUMO
STUDY OBJECTIVES: Epilepsy and obstructive sleep apnea syndrome (OSAS) are each relatively common in children. OSAS may affect cognition, such that recognition of OSAS is important for children and young people with epilepsy (CYPWE). Published pilot data reported 55% of CYPWE had symptoms suggestive of OSAS, compared with 7% of typically developing controls. The primary aim of this study was to ascertain OSAS prevalence by polysomnography in CYPWE, with secondary aims being to evaluate the utility of sleep questionnaires in CYPWE. METHODS: CYPWE and age- and sex-matched typically developing controls were studied. A single night of level I attended polysomnography was undertaken, along with questionnaires (Sleep-Related Breathing Disorder scale of the Pediatric Sleep Questionnaire, Pittsburgh Sleep Quality Index, and the childhood and adolescent Epworth Sleepiness Scale). OSAS was defined as obstructive apnea-hypopnea index of ≥ 1 event/h. RESULTS: Polysomnography was performed in 72 children including 48 CYPWE (60% male) and 24 controls (54% male). Mean age (11 years) was similar for CYPWE and controls (P = .42), with slightly higher body mass index z scores (0.7 vs 0.1, P = .03) noted in CYPWE. Mean obstructive apnea-hypopnea index was 0.61 in CYPWE vs 0.42 in controls (P = .62). Despite higher Sleep-Related Breathing Disorder scale of the Pediatric Sleep Questionnaire scores in CYPWE (0.38 vs 0.12, P < .001), no difference in OSAS prevalence (10% vs 4%, P = .78) was found. CYPWE had higher childhood and adolescent Epworth Sleepiness Scale (6 vs 3.5, P = .01) and Pittsburgh Sleep Quality Index (5 vs 3.3, P = .02) scores, indicating greater levels of daytime sleepiness and poorer sleep quality. CONCLUSIONS: The study found no evidence for increased OSAS prevalence in CYPWE, and the utility of the Sleep-Related Breathing Disorder scale of the Pediatric Sleep Questionnaire in predicting OSAS appears limited for CYPWE. CYPWE are, however, demonstrably sleepier and have poorer sleep quality. The cause for these findings remains unclear. CLINICAL TRIAL REGISTRATION: Registry: ClinicalTrials.gov; Name: Investigation of Sleep Quality and Prevalence of Sleep-disordered Breathing in Children and Young People With Epilepsy; URL: https://www.clinicaltrials.gov/study/NCT03103841; Identifier: NCT03103841. CITATION: Urquhart DS, McLellan AE, Hill LE, et al. A case-control study to investigate the prevalence of obstructive sleep apnea and the utility of the Sleep-Related Breathing Disorder scale of the Pediatric Sleep Questionnaire in children and young people with epilepsy. J Clin Sleep Med. 2024;20(7):1039-1047.
Assuntos
Epilepsia , Polissonografia , Apneia Obstrutiva do Sono , Humanos , Masculino , Criança , Feminino , Apneia Obstrutiva do Sono/epidemiologia , Apneia Obstrutiva do Sono/diagnóstico , Apneia Obstrutiva do Sono/fisiopatologia , Apneia Obstrutiva do Sono/complicações , Inquéritos e Questionários , Estudos de Casos e Controles , Prevalência , Polissonografia/métodos , Epilepsia/epidemiologia , Epilepsia/complicações , AdolescenteRESUMO
Epilepsy imposes a substantial burden on the Democratic Republic of Congo (DRC). These challenges encompass the lack of comprehensive disease surveillance, an unresolved understanding of its pathophysiology, economic barriers limiting access to essential care, the absence of epilepsy surgical capabilities, and deeply ingrained societal stigmas. Notably, the national prevalence of epilepsy remains undetermined, with research primarily concentrating on infectious factors like Onchocerca volvulus, leaving other potential causes underexplored. Most patients lack insurance, incurring out-of-pocket expenses that often lead them to opt for traditional medicine rather than clinical care. Social stigma, perpetuated by common misconceptions, intensifies the social isolation experienced by individuals living with epilepsy. Additionally, surgical interventions are unavailable, and the accessibility of anti-seizure medications and healthcare infrastructure remains inadequate. Effectively tackling these interrelated challenges requires a multifaceted approach, including conducting research into region-specific factors contributing to epilepsy, increasing healthcare funding, subsidizing the costs of treatment, deploying mobile tools for extensive screening, launching awareness campaigns to dispel myths and reduce stigma, and promoting collaborations between traditional healers and medical practitioners to enhance local understanding and epilepsy management. Despite the difficulties, significant progress can be achieved through sustained and compassionate efforts to understand and eliminate the barriers faced by epilepsy patients in the region. This review outlines essential steps for alleviating the epilepsy burden in the DRC. PLAIN LANGUAGE SUMMARY: There are not enough resources to treat epilepsy in the DRC. PWEs struggle with stigma and the lack of money. Many of them still use traditional medicine for treatment and hold wrong beliefs about epilepsy. That is why there is a need for more resources to make the lives of PWEs better in the DRC.
Assuntos
Epilepsia , Onchocerca volvulus , Oncocercose , Animais , Humanos , República Democrática do Congo/epidemiologia , Oncocercose/complicações , Oncocercose/epidemiologia , Onchocerca volvulus/fisiologia , Epilepsia/tratamento farmacológico , Fatores de RiscoRESUMO
BACKGROUND: An epilepsy-related attendance at A&E is associated an increased risk of subsequent death within 6 months. Although further work is required to provide a definitive explanation to account for these findings, in the interim it would seem reasonable that services are designed to ensure timely access and provide support at a time of greatest risk. We aim to determine the frequency of patients accessing specialist neurology services following an epilepsy-related admission/unscheduled care episode and consider ASM adherence at the point of attendance. METHODS: Patients were identified retrospectively via the NHS Greater Glasgow and Clyde live integrated epilepsy Dashboard following an unscheduled epilepsy-related admission or A&E attendance between 1st January 2022 and 30th June 2022. We calculated adherence to anti-seizure medication for a period of 6 months prior to admission and defined poor medication adherence as a medication possession ratio of less than 80 %. We evaluated the rate of any outpatient neurology clinic attendance in the subsequent 3, 6 and 12 months following an epilepsy-related unscheduled care episode. Additional clinical information was identified via the electronic patient records. RESULTS: Between 1st Jan 2022 and 30th June 2022, there were 266 emergency care seizure-related attendances. The mean age at attendance was 46 years (range: 16-91). Most of PWE were males (63 %) and 37 % were females. Epilepsy classification-29.3 % had GGE, 41.7% had focal epilepsy, and in 29 % of cases the epilepsy was unclassified. Of the admissions, 107/ 266 (40.2 %) generated follow-up within 6 months of attendance. Poor medication adherence was noted in 54/266 (20.3 %). 28.2 % of cases had input from on-call neurology service during admission/ED attendance, and of those 60 % had ASM adjusted. 18 % of attendances had a background diagnosis of learning disability. One-third of attendances of PWE had a history of mental health disorder 35 % (93/266). 25 % of ED attendances noted an active history of alcohol consumption misuse or/and recreational drug use. 14 (5.5 %) of PWE died during the period of interest (12 months following the last ED visit). In 6/14 (42.3 %) death was associated with poor medication adherence. CONCLUSION: This study demonstrates that a significant proportion of patients who experienced seizure-related admissions/ attendance did not access specialist neurology services in a timely manner. In addition, poor medication adherence remains a problem for a substantial number of people living with epilepsy. Early access to specialist services may go some way to improving care and reducing excessive mortality in PWE by allowing anti-seizure medication to be titrated and poor medication adherence to be addressed in those at greatest risk.
Assuntos
Serviços Médicos de Emergência , Epilepsia , Masculino , Feminino , Humanos , Adolescente , Adulto Jovem , Adulto , Pessoa de Meia-Idade , Idoso , Idoso de 80 Anos ou mais , Estudos Retrospectivos , Epilepsia/tratamento farmacológico , Epilepsia/epidemiologia , Epilepsia/diagnóstico , Adesão à Medicação/psicologia , ConvulsõesRESUMO
BACKGROUND: Delayed on-scene time by emergency medical services (EMS) can have detrimental effects on critical cases for people with epilepsy (PWE). In preparation for a super-aged society, a Community-based Integrated Care System is crucial to manage healthcare costs. However, sufficient coordination irrespective of sociomedical changes among medical providers is challenging. AIM: This study aimed to evaluate on-scene time delays in the treatment of PWE, identify factors associated with such delays, and clarify regional differences. The focus was on the volume of acute care beds in regions with a developed Community-based Integrated Care System. METHODS: This population-based observational study evaluated on-scene time delays in the treatment of PWE across six major cities in western Japan between 2017 and 2021. In addition, we also evaluated the association between regional differences focusing on volume of acute care beds ("Reduced region" and "Preserved region", as cities with numbers of acute care beds per 1,000 people below and above the national average, respectively) along with sociomedical factors associated with on-scene time delays. RESULTS: This study included 8,737 PWE transported by EMS, with a mean on-scene time for EMS ranging from 12.9 ± 6.8 min to 21.7 ± 10.6 min. On-scene time delays were evident in Reduced regions, with an increase of 1.45 min (95 % confidence interval 0.86-2.03 min, p < 0.001). A high total EMS call volume independently influenced on-scene time delays during the middle period of the pandemic in Reduced regions. CONCLUSION: Optimal coordination must be facilitated to ensure the effective functioning of the Community-based Integrated Care System, particularly during unusual circumstances.
Assuntos
Prestação Integrada de Cuidados de Saúde , Serviços Médicos de Emergência , Epilepsia , Humanos , Idoso , Fatores de Tempo , Convulsões/terapia , Epilepsia/terapiaRESUMO
AIM: We translated the Epilepsy Self-stigma Scale (ESSS) into Turkish and aimed to examine the Turkish version ESSS (ESSS-T) validity and reliability. MATERIALS AND METHOD: From April to August 2023, patients with epilepsy (PWE) were recruited from the neurology outpatient clinic of Ataturk University Hospital in the eastern Turkish city of Erzurum (inclusion criteria: age 18 years or older and adequate reading and speaking ability in Turkish). We conducted our survey using a self-administered questionnaire. The questionnaire consisted of the ESSS-T after appropriate translation by back-translation, and self-esteem (the Rosenberg's Self-Esteem Scale, RSES), depression (the Neurological Disorders Depression Inventory for Epilepsy, NDDI-E), and general stigma (the Stigma Scale for Epilepsy, ESE) for construct validity. Exploratory factor analysis (EFA) and confirmatory factor analysis (CFA) were used to test factorial validity. Also, Cronbach's alpha coefficient was calculated to verify reliability. RESULTS: Of the 126 patients, 106 agreed to give informed consent and responded to the questionnaire (84.1 % response rate). The results of EFA suggested the same three-factor structure as in the original version, but CFA showed some limitations in interpreting the three-factor structure and it may be safer to understand it as a unifactorial structure. The alpha coefficients were also validated by the ESSS-T. The alpha coefficients were α = 0.74 for the ESSS-T scale as a whole and α = 0.69-0.74 for each subscale, which were generally acceptable values. CONCLUSION: The Turkish version of the ESSS proved valid and reliable. It is a measurement tool with a three-dimensional structure. It can be used to assess the self-stigmatization of patients with epilepsy in Turkey.
Assuntos
Epilepsia , Estigma Social , Humanos , Adolescente , Turquia , Reprodutibilidade dos Testes , Epilepsia/diagnóstico , Estereotipagem , Inquéritos e Questionários , PsicometriaRESUMO
OBJECTIVE: To assess the impact of epilepsy and antiseizure medications (ASMs) on sleep quality in people with epilepsy (PWE). METHODS: An online survey was conducted in France, Germany, Italy, Spain and the UK among PWE taking >1 ASM and matched controls. Sleep quality was evaluated using the Pittsburgh Sleep Quality Index (PSQI). Associations between sleep quality (global PSQI) and overall quality of life (QoL; assessed using the 12-Item Short Form Survey [SF-12]) and sleep quality and depressive symptoms (assessed using the Neurological Disorders Depression Inventory for Epilepsy [NDDI-E]) were also evaluated. RESULTS: Overall, 500 PWE and 500 matched controls were included. PWE had significantly greater mean global PSQI scores than controls (9.32 vs 7.56; p < 0.0001), with 80% reporting a score >5 versus 66% of controls (p < 0.001). PWE experienced significantly more problems with most PSQI components than controls. Mean global PSQI scores in PWE receiving 2 versus ≥3 ASMs were 9.03 and 10.18, respectively (p < 0.004); global PSQI scores >5 were reported in 76% versus 90%, respectively (p = 0.001). Regimens containing lamotrigine or phenobarbital were associated with poorer sleep quality than those without these ASMs. In PWE, negative correlations were identified between global PSQI scores and both the SF-12 physical and mental components (Pearson's correlation coefficient [PCC], -0.61 and -0.40, respectively); NDDI-E and global PSQI scores were positively correlated (PCC, 0.6). CONCLUSIONS: PWE experience significantly worse sleep quality than people without epilepsy, with some ASMs contributing to poorer sleep. QoL and physical and mental health were all affected by sleep quality in PWE.
Assuntos
Epilepsia , Qualidade de Vida , Adulto , Humanos , Epilepsia/complicações , Epilepsia/tratamento farmacológico , Anticonvulsivantes/uso terapêutico , Sono , Inquéritos e QuestionáriosRESUMO
Psychosocial education programs for people with epilepsy (PWE) can improve epilepsy knowledge and quality of life (QOL), whereas the availability of these programs is limited in Japan compared to other developed countries. This study evaluated the feasibility and effectiveness of a one-day group psychosocial education program named the "one-day Epi-school" for PWE and their relatives. The previous program (Epi-school) required consistent participation in three sessions, resulting in problems with program continuation rates, with 45.5% of PWE completing the program. Therefore, the "one-day Epi-school" was designed to provide information about epilepsy and address psychosocial issues related to coexisting epilepsy symptoms, such as self-stigma and self-esteem, while allowing participants to accomplish these programs within a single day. The study recruited a sample of 32 PWE and their relatives from a psychiatric clinic. They completed assessments of knowledge, self-stigma, self-esteem, and quality of life before and after the program. The results exhibited a significant increase in epilepsy knowledge after the intervention for PWE and their relatives. However, we could not identify other significant changes. The participation completion rate was 100%. The post-participation questionnaire proved beneficial to interact with other PWE. The study suggests that a single intervention, e.g., the one-day Epi-school, may be insufficient for enhancing other factors, yet it can be an adequate opportunity for learning and interacting. It is also necessary to implement future studies with larger sample sizes, a control group, and prolonged follow-up periods for the program's value and validity.
RESUMO
BACKGROUND: Vitamin D deficiency among adult people with epilepsy (PWE) is scarcely studied, despite its essential role in bone health and maintaining homeostasis. Several studies have studied the relationship between factors related to epilepsy and vitamin D metabolism. We aim to investigate this in our multi-ethnic society. METHODS: This was a single-center cross-sectional study. We recruited 159 participants diagnosed with epilepsy on antiseizure medications (ASMs). We included those aged 18 years and above, excluding patients with long-term medical conditions that would affect vitamin D metabolism. Sociodemographic data and details of epilepsy were collated. Venous sampling was performed to analyze the levels of albumin-corrected calcium, phosphate, alkaline phosphatase, and 25-hydroxyvitamin D3 [25(OH)D]. Serum 25(OH)D level is defined as deficient (<20 ng/ml), insufficient (20-29 ng/ml), and sufficient (≥30 ng/ml). RESULTS: The study reported that 73 (45.9%) participants had vitamin D deficiency, 38 (23.9%) had vitamin D insufficiency, and 48 (30.2%) patients had sufficient vitamin D levels. The predictors identified were PWE aged 18 to 44 years old (p = 0.001), female gender (OR 3.396, p = 0.002), and ethnicity (p < 0.001), specifically Malay and Chinese. However, no significant association was identified between types of ASMs, serum calcium, or the prevalence of vitamin D deficiency. CONCLUSION: Vitamin D deficiency among PWE is prevalent in our local population, suggesting that regular screening should be considered for those at risk. Early identification would allow intervention to reduce the risk of future complications.
Assuntos
Epilepsia , Deficiência de Vitamina D , Humanos , Adulto , Feminino , Adolescente , Adulto Jovem , Estudos Transversais , Cálcio , Prevalência , Deficiência de Vitamina D/complicações , Deficiência de Vitamina D/epidemiologia , Vitamina D , Epilepsia/complicações , Epilepsia/epidemiologia , Epilepsia/tratamento farmacológicoRESUMO
Introduction: Stress is a common psychological problem present in people with epilepsy and has a serious impact on the health-related satisfaction of people with epilepsy and their cohabiters. This study aimed to assess the magnitude and related factors of stress. Methods: A hospital-based cross-sectional study was carried out among 301 systematically chosen people with epilepsy. The seven stress-related items of the Depression, Anxiety, and Stress -21 questionnaire was used to measure stress. Data were entered using Epi Info and analyzed by SPSS version 25. Predictors with a p-value < 0.20 in the bivariate logistic regression were transferred into the multivariate model. A p-value of less than 0.05 was viewed as statistically significant. Result: The prevalence of stress symptoms in this study was 23.9%. Daily labor occupational status with Adjusted Odds ratio [(AOR) = 0.042, 95% CI: 0.004, 0.469], onset of illness at the age of 18 years and above (AOR = 0.188, 95% CI: 0.046, 0.771), perceived stigma (AOR = 3.320, 95% CI: 1.345, 8.200), the presence of anxiety symptoms (AOR = 8.275, 95% CI: 3.345, 20.471), and belief that the condition is untreatable (AOR = 6.360, 95% CI: 1.647, 24.562) were significantly associated factors. Conclusion: The occurrence of stress was high, and it reinforced that there is a requisite for the identification and handling of stress-related symptoms among people with epilepsy.
RESUMO
OBJECTIVES: During the coronavirus disease 2019 (COVID-19) pandemic, the global population experienced changes in diagnosis and treatment patterns. The aim of this study was to evaluate the influence of the COVID-19 pandemic on people with epilepsy (PWE) and epilepsy specialists in China. METHODS: We retrospectively evaluated newly diagnosed PWE from January 2018 to January 2022 at Shanxi Bethune Hospital. The clinical characteristics of PWE and the prescription habits of epilepsy specialists were analyzed. We also explored changes in seizure control among PWE as a result of the COVID-19 pandemic and assessed the possible causes. RESULTS: After excluding 49 PWE who were lost to follow-up, 421 PWE were included in the study. They were divided into a prepandemic group and a pandemic group, with December 2019 as the boundary. By comparing the two groups, we found that the duration between first symptom detection and diagnosis was longer in the pandemic group than in the prepandemic group. Epilepsy specialists preferred prescribing the fast-acting antiepileptic drug levetiracetam (LEV) in the pandemic group. During the COVID-19 pandemic, 49.57% of PWE reported difficulties in accessing their epilepsy healthcare provider, and 26.96% reported that appointments with their providers occurred as usual. A lack of anti-seizure medication (ASM) availability was reported by 32.17% of subjects. An increase in seizure frequency was noted in 25.22% of the PWE during the pandemic. The factors increasing seizure frequency during the pandemic were fear of COVID-19, exacerbation of mental states, sleep deprivation, cancelation of regular medical visits, difficulties accessing epilepsy healthcare providers, and a lack of ASM availability. CONCLUSION: The COVID-19 pandemic exposed PWE to harmful consequences mainly due to medical shortages and worse life states. During the pandemic, there were delays in the diagnosis of PWE, and doctors' prescription habits changed. We must consider the lessons learned during this period of social restrictions and employ recent technological advances to improve treatment for PWE.
RESUMO
OBJECTIVE: The objective of this study was to determine the age, gender, and site-specific prevalence of fractures in people with epilepsy (PWE) and matched general population comparators in a nationwide study in North Macedonia between 2015 and 2018. METHODS: PWE and matched controls were selected through a systematic search of the electronic National Health System (eNHS). We determined the period prevalence (PP) of all site-specific fractures. We also calculated gender and age-specific incidence rate ratios (IRR) for various fractures. Odds ratios (ORs) and risk ratios (RR) were estimated for the number and type of ASM as well as comorbid conditions. RESULTS: Out of 13 818 prevalent epilepsy cases, 6383 (46.2%) were females, and 7435 (53.8%) were males. 109 PWE out of 1000 had at least one fracture during the study period and ~8 people out of 1000 in the general population. The most frequent sites in terms of PP both in PWE and controls, were fractures of the lower arm, hip and femur, and lower leg. Significant differences in PP for all fracture locations were observed between PWE and controls (P < 0.001). The noticeable differences of â¼100 times higher PP were observed for fractures of the skull and jaw in PWE. IRR of any fracture in PWE was 272.84/10 000 person-years; higher in the older age groups and among people who received >2 ASM. Fracture risk was increased with the use of >2 ASM (OR: 1.56; 95% CI: 1.32-1.84 and RR: RR: 1.32). The presence of comorbidities also increased fractures risk (OR: 1.24; 95% CI: 1.10-1.38). SIGNIFICANCE: This population-based study depicts a higher fracture prevalence in PWE compared to the general population. A higher number of ASM and the presence of comorbidities increase the risk of fractures and targeted prevention might be needed in those subgroups of PWE.
Assuntos
Epilepsia , Fraturas Ósseas , Masculino , Feminino , Humanos , Idoso , Estudos de Coortes , Epilepsia/epidemiologia , Epilepsia/complicações , Comorbidade , Fraturas Ósseas/epidemiologia , Fraturas Ósseas/etiologia , IncidênciaRESUMO
CONTEXT: The association between epilepsy control and the duration of sleep among people with epilepsy (PWE) is not well studied in Middle Eastern countries such as Oman. AIMS: To describe the sleep habits of PWE in Oman and explore the association of their sleep habits at night and afternoon siesta with the level of seizure control achieved and antiseizure medications (ASMs) consumed. METHODS: The subjects of this cross-sectional study were adult epilepsy patients attending a neurology clinic. Their sleep parameters were measured for one week using actigraphy. Home sleep apnea testing for one night was conducted to rule out obstructive sleep apnea (OSA). RESULTS: A total of 129 PWE completed the study. Their mean age was 29.8⯱â¯9.2⯠years, and their mean body mass index (BMI) was 27.1 kg/m2. There was no significant difference between the people with controlled and uncontrolled epilepsy as regards the duration of night sleep or afternoon siesta (p = 0.24 and 0.37, respectively). There was also no significant correlation between their nighttime sleep duration, afternoon siesta, and the number of ASMs they consumed (p = 0.402 and 0.717, respectively). CONCLUSION: The study revealed that the sleep habits of PWE with uncontrolled epilepsy who consumed more ASMs were not significantly different from those with controlled epilepsy who consumed fewer ASMs.
RESUMO
OBJECTIVE: Self-stigma is the internalization of unfavorable public perceptions, which people with epilepsy (PWE) frequently experience. PWE with strong self-stigma have low self-esteem and are less likely to engage in treatment behavior. The Epilepsy Self-Stigma Scale (ESSS) has been developed and validated in Japan. We translated the ESSS into German for this study to examine its reliability and validity. METHODS: We created the German version of ESSS (ESSS-G) based on the original Japanese version. From May to October 2022, we recruited out- and inpatients from Bethel Epilepsy Centre, University Hospital for Epileptology, for psychometric evaluation. Inclusion criteria were an age of ≥18 years, sufficient reading and speaking skills in German, and the ability to comprehend the German questionnaires. Participants also completed the Rosenberg Self-Esteem Scale (RSES), Neurological Disorders Depression Inventory for Epilepsy (NDDI-E), Generalized Anxiety Disorder 7 (GAD-7), Epilepsy Knowledge Scale, and items on "overall quality of life (QOL)" and "overall health" (items from QOLIE-31). RESULTS: One hundred twenty-eight of 146 patients asked to participate granted informed consent and completed the study questionnaire (87.7% response rate). 115 cases were analyzed since 13 did not match the inclusion criteria. The analysis revealed a single factor explaining 49.2% of the total variance. All factor loadings were >0.40, and the reliability was high (Cronbach's α = 0.80). Higher ESSS total scores were associated with higher anxiety (GAD-7, r = 0.54, P < 0.001) and depression (NDDI-E, r = 0.45, P < 0.001), lower self-esteem (RSES, r = -0.41, P < 0.001), overall QOL (r = -0.40, P < 0.001), and overall health (r = -0.35, P < 0.001), but not with knowledge about epilepsy (r = 0.03, P = 0.770). In Germany, females, younger individuals, patients with earlier seizure onset, and those with generalized epilepsy had significantly higher self-stigma. SIGNIFICANCE: The German version of the ESSS proved reliable and valid. It allows to evaluate the efficacy of treatment strategies in lowering self-stigma and conducting intercultural comparisons of epilepsy self-stigma.