Epilepsy & Behavior最新文献

{"title":"Periconceptional folic acid supplementation for women with epilepsy: A systematic review of the literature","authors":"","doi":"10.1016/j.yebeh.2024.110064","DOIUrl":"10.1016/j.yebeh.2024.110064","url":null,"abstract":"<div><h3>Objective</h3><div>This study aimed to investigate whether folic acid supplementation at normal or high doses could reduce major congenital malformations and improve neurodevelopment in the offspring of women with epilepsy (WWE).</div></div><div><h3>Methods</h3><div>The MEDLINE, EMBASE, Web of Science, Cochrane Library, and <span><span>ClinicalTrials.gov</span><svg><path></path></svg></span> databases were searched for observational studies reporting pregnancy outcomes and information about folic acid supplementation in WWE, with a cut-off date of December 5, 2023. Data extraction and synthesis were performed in accordance with the PRISMA guidelines. The methodological quality of the studies was assessed using the Newcastle-Ottawa Scale. A random-effects <em>meta</em>-analysis was conducted to obtain pooled odds ratios (ORs) and 95% confidence intervals (CI), to estimate the effect of periconceptional folic acid supplementation on pregnancy outcomes in WWE. Sensitivity analyses including only studies with WWE who took anti-seizure medications during pregnancy or studies with a sample size greater than 100 were further performed. This study was registered in PROSPEROID (no. CRD42019141820).</div></div><div><h3>Results</h3><div>The database search yielded 23 eligible articles. Unexpectedly, the results of subsequent <em>meta</em>-analysis showed that the risk of major congenital malformations was relatively higher in those with periconceptional folic acid supplementation (17463 pregnancies, OR, 1.34; 95 %CI, 1.12–1.6), and was similar between those with and without folic acid supplementation ≧ 4 mg (3822 pregnancies, OR, 0.9; 95 %CI, 0.65–1.24). Results showed that periconceptional folic acid supplementation may be beneficial for neurodevelopment but the evidence was limited.</div></div><div><h3>Conclusions</h3><div>This systematic review showed no evidence of a beneficial effect of folic acid supplementation in reducing the risk of major congenital malformations, while the relative risk was slightly higher in those receiving periconceptional folic acid supplementation. Nevertheless, folic acid supplementation may improve neurobehavioral outcomes.</div></div>","PeriodicalId":11847,"journal":{"name":"Epilepsy & Behavior","volume":null,"pages":null},"PeriodicalIF":2.3,"publicationDate":"2024-09-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142319044","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Experiences of COVID-19 in an Australian community cohort of adults with epilepsy","authors":"","doi":"10.1016/j.yebeh.2024.110062","DOIUrl":"10.1016/j.yebeh.2024.110062","url":null,"abstract":"<div><div>A number of studies have been conducted on the effects of the COVID-19 pandemic on people with epilepsy (PWE), some showing increased seizures, poorer psychosocial states, and reductions in Quality of Life (QoL). During the latter stages of COVID-19, well before the UN declared an end to the state of emergency, our study was conducted in Australia of a sample of women and men ≥ 18 years. The study was based on Wave 6 of the Australian Epilepsy Longitudinal Study (AELS). It used mixed methods. Two main scales were used in the study, the QOLIE-31 for QoL and the MOS-8 for social support. The quantitative component of the study looked at QoL in relation to COVID-19 and found no QoL differences in those who contracted the virus. However, there was significantly lower QoL in those having difficulties in seeing a GP, for those with limited access to healthcare, and for those who had problems in gaining ASMs (anti-seizure medicines) and/or other medicines and being unvaccinated. Being younger and living in rental accommodation were most likely significant contributing factors. Those not being vaccinated were less than the proportion in the whole national population., The qualitative component focussed on reasons for being vaccinated or not. Overall, the responses to the question “Were you vaccinated?” demonstrated that people made informed decisions on vaccinations, taking into account their own health as well as protecting family and public health considerations.</div></div>","PeriodicalId":11847,"journal":{"name":"Epilepsy & Behavior","volume":null,"pages":null},"PeriodicalIF":2.3,"publicationDate":"2024-09-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S152550502400444X/pdfft?md5=3a1f11cfda83e3a2a739c4c3c2569767&pid=1-s2.0-S152550502400444X-main.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142315562","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Reading and language profiles among children with epilepsy","authors":"","doi":"10.1016/j.yebeh.2024.110057","DOIUrl":"10.1016/j.yebeh.2024.110057","url":null,"abstract":"<div><div>This study evaluated the profile of language and reading skills among children with epilepsy. We utilized a sample of children from an epilepsy database who were administered a measure of reading comprehension, excluding those whose intellectual skills were in the impaired range (N=147; age range 4–20 years, 52 % female). Additional measures that were considered within the sample included broad language skills, pre-reading skills (phonological processing, rapid naming, decoding), and basic reading skills (sight word reading, reading fluency). We further considered associations between these skills and seizure characteristics (age of onset, number of anti-seizure medications, seizure type, seizure frequency, and localization). We found that our sample performed significantly lower on all language and reading skills, on average, than normative expectations. Within our sample, relative strengths were noted in broad language skills, and relative weaknesses were found in phonological processing, rapid naming, reading fluency, word reading, and reading comprehension. We further identified a subgroup of our sample (31 %) who were characterized as struggling in reading comprehension (performing one standard deviation below the normative mean); these children exhibited a profile more consistent with non-epilepsy samples with reading disabilities/ dyslexia. Seizure variables that were associated with language and reading skills included age of onset, number of anti-seizure medications, seizure frequency, and having generalized (versus focal) seizures. These results have important implications for the identification and treatment of reading problems in children with epilepsy.</div></div>","PeriodicalId":11847,"journal":{"name":"Epilepsy & Behavior","volume":null,"pages":null},"PeriodicalIF":2.3,"publicationDate":"2024-09-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142315563","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"A roadmap to closing the evidence-to-practice gap in status epilepticus","authors":"","doi":"10.1016/j.yebeh.2024.110033","DOIUrl":"10.1016/j.yebeh.2024.110033","url":null,"abstract":"<div><div>Status epilepticus (SE) is a time-sensitive, potentially life-threatening neuro-emergency associated with poor functional outcomes and increased hospital resource utilization especially when it progresses to refractory or super-refractory forms. Timely recognition &amp; treatment improves outcomes, however gaps between recommended and implemented care are common and pervasive.</div><div>This review provides a roadmap for incorporating the relatively new field of Implementation Science in promoting the systematic uptake of evidence-based practices into the real-world care of patients with SE. A multifaceted approach − including better integration of real-world implementation and research infrastructure, an emphasis on standardizing and harmonization clinical data, re-examining funding priorities, regulatory reform, and the formation of transdisciplinary teams and learning collaboratives − has the potential to advance the care of patients in SE from its current status quo.</div><div>This topic was presented at the 9th London-Innsbruck Colloquium on Status Epilepticus and Acute Seizures held in April 2024.</div></div>","PeriodicalId":11847,"journal":{"name":"Epilepsy & Behavior","volume":null,"pages":null},"PeriodicalIF":2.3,"publicationDate":"2024-09-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142310765","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Factors influencing efficacy and relapse of adrenocorticotropic hormone in infantile epileptic spasms syndrome","authors":"","doi":"10.1016/j.yebeh.2024.110055","DOIUrl":"10.1016/j.yebeh.2024.110055","url":null,"abstract":"<div><h3>Background</h3><div>Infantile epileptic spasms syndrome (IESS) is a severe epileptic condition characterized by persistent uncontrolled seizures, with some children experiencing recurrent seizures despite multiple pharmacological therapies. The prognostic risk factors<!--> <!-->associated with IESS remain unclear. This study aimed to evaluate the factors influencing the efficacy and relapse of adrenocorticotropic hormone (ACTH) treatment for IESS in infants, as well as to assess the correlation between the Burden of Amplitudes and Epileptiform Discharges (BASED) score and clinical outcomes.</div></div><div><h3>Methods</h3><div>A retrospective analysis was conducted on a cohort of 88 pediatric patients diagnosed with IESS who received ACTH therapy at our hospital from February 2016 to August 2023. Patients were categorized into response (n = 47) and non-response (n = 41) groups based on their treatment response at day 28. Responders were further classified into relapse and non-relapse groups. A modified Poisson regression model and receiver operating characteristic (ROC) curves were employed to evaluate the positive predictive values.</div></div><div><h3>Results</h3><div>In this study, a total of 47 patients (53.4 %) responded to ACTH treatment. Patients in the response group demonstrated significantly greater reductions in BASED scores by day 14 of ACTH treatment, yielding an area under the curve (AUC) of 0.859 (95 % CI: 0.782–0.937, P＜0.05), with a sensitivity of 68.1 % and a specificity of 95.1 %. The optimal cut-off point was established at ≥ 2, corresponding to a Youden index of 0.632. Notably, patients<!--> <!-->who were on anti-seizure medications (ASMs) before ACTH treatment and those with developmental delay prior to the onset of spasms exhibited lower short-term response rates (P＜0.05), although these factors did not demonstrate predictive value. Among the responders, 20 cases (42.6 %) experienced a relapse, with only those patients showing specific abnormalities on cranial magnetic resonance imaging (MRI) exhibiting a statistically higher proportion of relapse.</div></div><div><h3>Conclusion</h3><div>Patients receiving ASMs before ACTH treatment and those with developmental delays prior to the onset of spasms may have a less favorable therapeutic response. A reduction in BASED scores of 2 or greater by day 14 of ACTH treatment may signify a potentially positive treatment response. Additionally, patients with IESS who present with specific abnormalities on cranial MRI may have an increased likelihood of relapse following ACTH treatment.</div></div>","PeriodicalId":11847,"journal":{"name":"Epilepsy & Behavior","volume":null,"pages":null},"PeriodicalIF":2.3,"publicationDate":"2024-09-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S1525505024004372/pdfft?md5=41b027df4c645eb5171d4764d867d4e0&pid=1-s2.0-S1525505024004372-main.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142307442","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Ketogenic diet effectiveness is superior for drug resistant epilepsy with causative genetic mutation than those without genetic etiology","authors":"","doi":"10.1016/j.yebeh.2024.110052","DOIUrl":"10.1016/j.yebeh.2024.110052","url":null,"abstract":"<div><h3>Aim</h3><div>Epilepsy with genetic etiology is high prevalence of DRE, which is reported responsive to ketogenic diet therapy (KDT). Our retrospective cohort study attempted to investigate the KD responsiveness between DRE with genetic and non-genetic etiology.</div></div><div><h3>Method</h3><div>Non-fasting gradual KD initiation protocol (GRAD-KD) and five-day diet program was implemented. Participants were categorized into genetic epilepsy or non-genetic epilepsy groups based on genetic tests. Monthly seizure frequencies and seizure reduction rate after KDT 3 months and 6 months were compared between two groups.</div></div><div><h3>Results</h3><div>Forty-six patients with genetic epilepsy and ninety-four patients with non-genetic epilepsy were recruited. Among 46 patients with genetic epilepsy, 12 patients withdrew from diet before 3 months of KDT, and 7 patients withdrew from diet before 6 months of KDT, thus, 27 patients retained the diet. Among 94 patients with non-genetic epilepsy, 20 patients withdrew from diet before 3 months of KDT, and 21 patients withdrew from diet before 6 months of KDT, 53 patients retained the diet. For the 46 patients with genetic epilepsy, 12 patients had pathogenic variants related to developmental and epileptic encephalopathy (DEE), whereas other 34 patients had disease-causing variants other than DEE. The mean monthly seizure frequencies showed significantly decreased both in patient with genetic-and non-genetic epilepsy after 6 months of KDT, however, the seizure reduction rate was significantly higher in patients with genetic epilepsy than patients with non-genetic epilepsy after 6 months of KDT. In addition, our data demonstrated that KDT could significantly reduce seizure burden in patients with non-DEE than patients with DEE. In addition, the patients with non-DEE significantly achieved greater seizure reduction rate than patients with DEE after 6 months of KDT.</div></div><div><h3>Interpretation:</h3><div>Our data highlighted that KD effectiveness is more outstanding in decreasing seizure burdens for epileptic patients with genetic etiology than those without causative gene mutation. Additionally, KDT is also significantly effective for decreasing more seizure burdens for non-DEE patients than for DEE patients. We suggested epileptic patients caused by genetic mutation should implement KDT as early as possible.</div></div>","PeriodicalId":11847,"journal":{"name":"Epilepsy & Behavior","volume":null,"pages":null},"PeriodicalIF":2.3,"publicationDate":"2024-09-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142307443","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Exploring religious coping strategies epilepsy patients in Turkey: A descriptive study","authors":"","doi":"10.1016/j.yebeh.2024.110060","DOIUrl":"10.1016/j.yebeh.2024.110060","url":null,"abstract":"<div><h3>Objective</h3><p>It is seen that religious coping methods are used in the literature, but the existing literature on religious coping methods and coping strategies used by epilepsy patients is insufficient. Therefore, this study aimed to determine the positive and negative religious coping levels of epilepsy patients.</p></div><div><h3>Methods</h3><p>This research is a descriptive research type. The research data were collected from patients with epilepsy living in a province in eastern Turkey between April and June 2024. The research population consists of epilepsy patients living in Erzurum province. The sample consisted of 154 patients who agreed to participate in the study. Data collection tools were “Questionnaire Form” and “Religious Coping Scale.” Frequency, percentage calculations, mean and standard deviation values were used to evaluate the data. One Way Anova, Independent Sample <em>t</em>-test, Mann-Whitney U, and Pearson correlation tests were also used.</p></div><div><h3>Results</h3><p>Positive religious coping scores (22.90 ± 5.35) and Negative religious coping scores (7.24 ± 3.25) of epilepsy patients were found to be at high levels. Participants’ gender, marital status, occupation, income status, prayer, fasting, and Quran reading habits significantly affected their positive religious coping behaviors (p &lt; 0.05). In addition, it was determined that as the age of the participants increased, they resorted to positive religious coping behaviors more (r: 0.215, p &lt; 0.05).</p></div><div><h3>Conclusions</h3><p>The results of the study show that the positive and negative religious coping levels of epilepsy patients are high. In addition, the participants prefer positive religious coping behaviors more.</p></div>","PeriodicalId":11847,"journal":{"name":"Epilepsy & Behavior","volume":null,"pages":null},"PeriodicalIF":2.3,"publicationDate":"2024-09-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142271882","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Clinical characteristics of a first seizure evaluation clinic in an academic center","authors":"","doi":"10.1016/j.yebeh.2024.110054","DOIUrl":"10.1016/j.yebeh.2024.110054","url":null,"abstract":"<div><h3>Introduction</h3><div>Evaluation by an epileptologist can help distinguish epileptic seizures from seizure mimickers. Proper and timely diagnosis of a seizure or new onset epilepsy is of critical importance due to implications regarding treatment, prognosis, quality of life, morbidity, and mortality. The goal of our study is to describe the demographics and clinical characteristics of patients referred to a first seizure clinic at a tertiary academic center within Chicago, Illinois.</div></div><div><h3>Methods</h3><div>This is a retrospective cohort study of adult patients referred to our clinic. Patients were identified through the electronic medical record from March 2021 to March 2022. Charts were reviewed to assess pertinent clinical characteristics and patient demographic data.</div></div><div><h3>Results</h3><div>A total of 123 out of 138 (89.0 %) scheduled patients checked in to the visit between March 2021-March 2022, of which 87/123 (70.7 %) were diagnosed with a seizure. Other diagnoses included syncope (17/123, 13.8 %), undifferentiated event (16/123, 13.0 %), suspected psychogenic non-epileptic event (2/123, 1.6 %), and migraine (1, 0.8 %). Of those with a seizure, 73/87 (83.9 %) were unprovoked and 14/87 (16.1 %) were provoked. The average wait time to be seen as a new patient by an epileptologist was significantly shorter with the establishment of this clinic compared to the year prior (17 days versus 53 days, p value &lt; 0.001). The majority of patients had an EEG prior to or after the visit (121/123, 98.4 %), of which 24/121 (19.8 %) had interictal epileptiform activity. Findings relevant to the patient’s cause of epilepsy were found in 26/108 (24.1 %) of patients who underwent an MRI or CT scan of the head. There were 40/123 (32.5 %) patients prescribed an anti-seizure medication (ASM) prior to the first office visit and 65/123 (52.8 %) patients prescribed an ASM within the first three office visits.</div></div><div><h3>Conclusion</h3><div>A first seizure evaluation clinic in an urban setting is an achievable and efficient way to evaluate patients with paroxysmal events concerning for seizure in a timely manner. Most patients in this clinic were diagnosed with epileptic seizures. Timely ancillary testing with head imaging and EEG can help contribute to the diagnosis of epilepsy and guide treatment.</div></div>","PeriodicalId":11847,"journal":{"name":"Epilepsy & Behavior","volume":null,"pages":null},"PeriodicalIF":2.3,"publicationDate":"2024-09-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142282322","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Risk factors for secondary epilepsy following febrile seizures in children: A meta-analysis","authors":"","doi":"10.1016/j.yebeh.2024.110051","DOIUrl":"10.1016/j.yebeh.2024.110051","url":null,"abstract":"<div><h3>Objective</h3><p>To systematically assess the risk factors for secondary epilepsy in children with febrile seizures, in order to promptly identify early signs of epilepsy and establish a reliable foundation for timely clinical intervention and improved prognosis.</p></div><div><h3>Methods</h3><p>The databases, including CNKI, WanFang, VIP, CBM, PubMed, Embase, Web of Science, and the Cochrane Library were searched for relevant studies, up to October 2023. Two researchers independently collected and extracted data from selected studies, adhering to predefined criteria. Statistical analysis was performed using Stata 15.0.</p></div><div><h3>Results</h3><p>A total of 23 studies included 714 cases in the case group and 5269 cases in the control group. The results of Meta-analysis showed that preterm birth (OR=3.30, P=0.02), history of perinatal asphyxia (OR=3.94, P=0.001), age at the first seizure &lt; 12 months (OR=2.93, P=0.003), peak temperature &lt; 39℃ (OR=2.51, P&lt;0.001), onset of fever to seizure &lt; 1 h (OR=5.61, P&lt;0.001), Complex FS(OR=4.08, P&lt;0.001), duration of the seizure &gt; 15 min (OR=6.21, P&lt;0.001), Multiple seizures (≥2/episode) in one attack (OR=2.92, P&lt;0.001), focal seizures (OR=2.53, P=0.018), recurrent FS (≥2) (OR=3.49, P&lt;0.001), neurodevelopmental abnormality(OR=8.68, P&lt;0.001), developmental delay(OR=10.04, P&lt;0.001), family history of epilepsy (OR=2.74, P=0.004), family history of FS (OR=2.07, P=0.022), electroencephalogram (EEG) abnormal(OR=4.06, P&lt;0.001)and Brain imaging abnormalities (OR=2.84, P=0.002)were Risk factors for secondary epilepsy following FS in Children. Notably, gender (female) was not a significant factor.</p></div><div><h3>Conclusions</h3><p>This study provides a comprehensive and systematic discussion of the risk factors associated with secondary epilepsy in children with febrile seizures. It actively formulates intervention measures for modifiable risk factors and conducts early detection and continuous follow-up observation for non-modifiable high-risk children, thereby reducing the risk of epilepsy.</p></div>","PeriodicalId":11847,"journal":{"name":"Epilepsy & Behavior","volume":null,"pages":null},"PeriodicalIF":2.3,"publicationDate":"2024-09-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S1525505024004335/pdfft?md5=58b876a40ab325f2b49d66996aa971e0&pid=1-s2.0-S1525505024004335-main.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142271881","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The concept of “control” in people with epilepsy: A qualitative study","authors":"","doi":"10.1016/j.yebeh.2024.110059","DOIUrl":"10.1016/j.yebeh.2024.110059","url":null,"abstract":"<div><p>Epilepsy fundamentally involves a struggle with “control,” commonly framed in terms of reducing the frequency and severity of seizures. This paper seeks to understand how people with epilepsy (PWE) think about and define control, as well as the psychosocial outcomes of self-managing epilepsy and low perceived control.</p><p>Here, we employ a qualitative analysis of interviews with 64 adults with epilepsy in treatment in a tertiary referral center in New York City, conducted between July 2020 and July 2022 as part of a larger study of the lived experiences of PWE. The interviews were coded, and thematic analysis was used to identify participants’ constructions of control and the breadth of illness intrusiveness they experienced.</p><p>Findings indicate that applying the illness intrusiveness concept to epilepsy aligns with existing research, revealing that PWE are impacted in numerous ways beyond seizure frequency and severity. Participants reported significant anxiety related to the unpredictability of seizures and the potential embarrassment of having seizures in public. These insights highlight that illness self-management and social challenges are critical components of the experience of having epilepsy.</p><p>Our findings underscore the need for a wholistic approach to improving quality of life for PWE that recognizes the broader context of illness intrusiveness. By understanding and enhancing perceived control, future interventions can better support the mental health and overall well-being of PWE.</p></div>","PeriodicalId":11847,"journal":{"name":"Epilepsy & Behavior","volume":null,"pages":null},"PeriodicalIF":2.3,"publicationDate":"2024-09-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142271883","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}