Epilepsy & Behavior最新文献

{"title":"Towards user-centered design of medical devices for SUDEP prediction and prevention: Insights from persons with epilepsy and caregivers","authors":"","doi":"10.1016/j.yebeh.2024.110034","DOIUrl":"10.1016/j.yebeh.2024.110034","url":null,"abstract":"<div><h3>Objectives</h3><div>As epilepsy management medical devices emerge as potential technological solutions for prediction and prevention of sudden death in epilepsy (SUDEP), there is a gap in understanding the features and priorities that should be included in the design of these devices. This study aims to bridge the gap between current technology and emerging needs by leveraging insights from persons with epilepsy (PWE) and caregivers (CG) on current epilepsy management devices and understanding how SUDEP awareness influences preferences and design considerations for potential future solutions.</div></div><div><h3>Methods</h3><div>Two cross-sectional surveys were designed to survey PWE and CG on medical device design features, SUDEP awareness, and participation in medical device research. Data analysis included both qualitative thematic analysis and quantitative statistical analysis.</div></div><div><h3>Results</h3><div>The survey revealed that among 284 responses, CG were more aware of SUDEP than PWE. Comfort was identified as the primary concern regarding wearable medical devices for epilepsy management with significant differences between PWE and CG regarding acceptance and continuous use preferences. The thematic analysis identified integration with daily life, aesthetic and emotional resonance, adaptability to seizure characteristics, and user-centric design specifications as crucial factors to be considered for enhanced medical device adoption. The integration of a companion app is seen as an important tool to enhance communication and data sharing.</div></div><div><h3>Discussion</h3><div>This study reveals that while SUDEP awareness can promote the development of future SUDEP predictive and preventive medical devices, these should be designed to mitigate its impact on daily life and anxiety of both PWE and CG. Comfort and acceptance are seen as key priorities to support continuous use and are seen as a technical requirement of future medical devices for SUDEP prediction and prevention. Widespread adoption requires these technologies to be customizable to adapt to different lifestyles and social situations. A holistic approach should be used in the design of future medical devices to capture several dimensions of PWE and CG epilepsy management journey and uphold communication between healthcare professionals, PWE and CG.</div></div><div><h3>Conclusion</h3><div>Data from this study highlight the importance of considering user preferences and experiences in the design of epilepsy management medical devices with potential applicability for SUDEP prediction and prevention. By employing user-centered design methods this research provides valuable insights to inform the development of future SUDEP prediction and prevention devices.</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":"142282327","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":"Nursing education strategy for caregivers of children and adolescents with epilepsy","authors":"","doi":"10.1016/j.yebeh.2024.110035","DOIUrl":"10.1016/j.yebeh.2024.110035","url":null,"abstract":"<div><div>Epilepsy is a disease that commonly manifests in childhood and can significantly affect the quality of life for both sufferers and their families. As such, it necessitates comprehensive and high-quality healthcare.</div></div><div><h3>Objective</h3><div>To assess the impact of an educational intervention targeted to caregivers of children and adolescents with epilepsy.</div></div><div><h3>Materials and Methods</h3><div>A cross-sectional study conducted between February and November 2022, involving 140 patients and their primary caregivers who intentionally sought medical consultation at a pediatric hospital in Caldas, Colombia. Initial nursing consultations were conducted to identify clinical and demographic characteristics and to assess knowledge about the disease, its management, and care. Subsequently, a comprehensive educational process was implemented using various educational aids. After 60 days, feedback was provided to evaluate the caregivers’ learning.</div></div><div><h3>Results</h3><div>Focal epilepsy, generalized epilepsy and idiopathic focal epilepsy predominated in the medical diagnoses. The etiology highlighted genetic cause and structural 70% of caregivers were female. Caregivers’ schooling: 10% of caregivers did not have schooling, 28% had primary education, 46% had secondary education, 16% had postgraduate education. Caregivers demonstrated knowledge about epilepsy and its management, with the majority scoring above 50%. The posttest indicated improvement in learning processes, and caregivers expressed that it benefited them in learning first aid.</div></div><div><h3>Conclusion</h3><div>Establishing educational programs tailored to the needs of individuals and promoting care plans are essential for improving the living conditions of patients with epilepsy and their caregivers.</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":"142282324","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":"Progression to refractory status epilepticus: A machine learning analysis by means of classification and regression tree analysis","authors":"","doi":"10.1016/j.yebeh.2024.110005","DOIUrl":"10.1016/j.yebeh.2024.110005","url":null,"abstract":"<div><h3>Background and Objectives</h3><div>to identify predictors of progression to refractory status epilepticus (RSE) using a machine learning technique.</div></div><div><h3>Methods</h3><div>Consecutive patients aged ≥ 14 years with SE registered in a 9-years period at Modena Academic Hospital were included in the analysis. We evaluated the risk of progression to RSE using logistic regression and a machine learning analysis by means of classification and regression tree analysis (CART) to develop a predictive model of progression to RSE.</div></div><div><h3>Results</h3><div>705 patients with SE were included in the study; of those, 33 % (233/705) evolved to RSE. The progression to RSE was an independent risk factor for 30-day mortality, with an OR adjusted for previously identified possible univariate confounders of 4.086 (CI 95 % 2.390–6.985; p &lt; 0.001). According to CART the most important variable predicting evolution to RSE was the impaired consciousness before treatment, followed by acute symptomatic hypoxic etiology and periodic EEG patterns. The decision tree identified 14 nodes with a risk of evolution to RSE ranging from 1.5 % to 90.8 %. The overall percentage of success in classifying patients of the decision tree was 79.4 %; the percentage of accurate prediction was high, 94.1 %, for those patients not progressing to RSE and moderate, 49.8 %, for patients evolving to RSE.</div></div><div><h3>Conclusions</h3><div>Decision-tree analysis provided a meaningful risk stratification based on few variables that are easily obtained at SE first evaluation: consciousness before treatment, etiology, and severe EEG patterns. CART models must be viewed as potential new method for the stratification RSE at single subject level deserving further exploration and validation.</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":"https://www.sciencedirect.com/science/article/pii/S152550502400386X/pdfft?md5=64fb06f453f1a384d1ba397575f0b2c0&pid=1-s2.0-S152550502400386X-main.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142282326","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":"How far are we from the best preclinical models of drug-resistant epilepsy?","authors":"","doi":"10.1016/j.yebeh.2024.110029","DOIUrl":"10.1016/j.yebeh.2024.110029","url":null,"abstract":"<div><p>Drug-resistant epilepsy has a high prevalence worldwide despite efforts such as the Epilepsy Therapy Screening Program conducted by the National Institute of Neurological Disorders and Stroke. It is indicated that drug-resistant epilepsy has various manifestations, and each pattern of manifestation can be modeled using precise experimental models. However, the experimental models used to identify new antiseizure medications to control drug-resistant epilepsy to date do not typically take into account various clinical factors associated with this condition. These factors include comorbidities, sex, age, frequency of seizures and neuroinflammation. It is accordingly necessary to identify the proper characteristics of each type of drug-resistant epilepsy to be mimicked in preclinical models. The use of preclinical models mimicking the characteristics of the different patterns of drug-resistant epilepsy will allow identifying new therapeutic strategies to control this disorder. It is also essential to consider the heterogeneity of clinical factors involved in the condition of drug resistance in epilepsy to get the proper preclinical models.</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":"142271773","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":"Unveiling Saudi Physicians’ knowledge and attitude toward Psychogenic nonepileptic seizures (PNES): A cross-sectional study","authors":"","doi":"10.1016/j.yebeh.2024.110040","DOIUrl":"10.1016/j.yebeh.2024.110040","url":null,"abstract":"<div><h3>Objectives</h3><div>To assess the knowledge and attitudes of Saudi physicians from different specialties towards Psychogenic Non-Epileptic Seizures (PNES) and identify the challenges faced in managing this condition.</div></div><div><h3>Methods</h3><div>In November 2023, a questionnaire was distributed online to physicians through official targeted medical specialties societies. In February 2024 the study was closed. The survey was conducted in English, including questions about socio-demographics, knowledge about PNES’s clinical presentation, diagnosis, management, respondents’ experience, confidence and challenges in handling PNES cases.</div></div><div><h3>Results</h3><div>A total of 222 responses were collected. The overall knowledge score was 34.51 ± 9.67 out of 60, with 64.9 % of participants demonstrating good knowledge (score ≥ 50 %) and 35.1 % showing poor knowledge (score &lt; 50 %). The overall attitude score was 21.65 ± 7.49 out of 40, with 55.4 % of participants demonstrating a favorable attitude towards PNES diagnosis &amp; management (score ≥ 50 %), while 44.6 % displayed an unfavorable attitude (score &lt; 50 %). Neurologists and psychiatrists exhibited higher knowledge and more positive attitudes compared to other specialties. Emergency physicians, internists, and pediatricians showed the lowest scores of knowledge &amp; attitudes. Significant challenges included a lack of knowledge (41.0 %), insufficient diagnostic resources (35.6 %), and poor cross-disciplinary collaboration (36.0 %).</div></div><div><h3>Significance</h3><div>There is a critical need for improved knowledge about PNES characteristics, management, and training resources to enhance physicians’ attitudes toward PNES patients, particularly among specialties that frequently encounter these patients. Addressing the identified gaps can lead to better patient outcomes through timely diagnosis and appropriate treatment referrals.</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":"142282328","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":"Postoperative seizure outcomes and antiseizure medication utilization based on histopathological diagnosis: A retrospective cohort study","authors":"","doi":"10.1016/j.yebeh.2024.110056","DOIUrl":"10.1016/j.yebeh.2024.110056","url":null,"abstract":"<div><h3>Objective</h3><div>Analyze the association between histopathology, seizure outcomes, and drug load of antiseizure medications (ASMs) 5–8 years after epilepsy surgery to inform preoperative decision-making and consultation.</div></div><div><h3>Methods</h3><div>In this retrospective, non-interventional, single-center study, patients who visited the epilepsy clinic at West China Hospital, Sichuan University from Jan 1, 2015 to Dec 31, 2020 were assessed. Patients with postoperative histopathology after epilepsy resection were included and categorized into 13 etiological groups. The primary outcomes were achieving Engel class 1 at 1, 2, 3, 5, and 8 years postoperative. Secondary outcomes included the use of ASMs and comparison of postoperative seizure outcomes between adults and children. Univariate and multivariable analyses were conducted to explore the association between clinical characteristics such as histopathology and seizure outcomes.</div></div><div><h3>Results</h3><div>A total of 315 patients were include. Patients with embryonic dysplastic neuroepithelial tumor (DNT) achieved the best seizure outcomes (84.6 % Engel class 1). DNT (odds ratio, OR=0.103, 95 %CI=0.012–0.899), cavernous hemangiomas (OR=0.140, 95 %CI=0.024–0.819) and meningioma (OR=0.137, 95 %CI=0.021–0.910) were independently associated with a higher probability of seizure-free outcome. The results of epileptic seizures in adult and pediatric groups with different pathologies were significantly different, and the preoperative and postoperative ASM dosages were also different among adult patients with various etiologies. Additionally, multivariate analysis showed that early age at onset (adjusted hazard ratio (HR) = 1.754, 95 % CI=1.049–2.934, P=0.032), late surgical age (HR=0.569, 95 %CI=0.339–0.954, P=0.032), and longer duration from seizure onset to surgery (HR=1.735, 95 % CI=1.028–2.928, P=0.039) were independent predictors of unfavorable outcomes in epileptic seizures.</div></div><div><h3>Conclusions</h3><div>we demonstrated that the seizure outcomes of focal epilepsy have high pathological specificity, with histopathological diagnosis serving as a crucial and independent determinant of seizure outcome. Surgical assessment should be contemplated for all patients with presumed refractory focal epilepsy, irrespective of their age.</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":"142282325","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":"Depression and stigma among a sample of Egyptian adolescents with epilepsy and their impact on antiseizure medications adherence","authors":"","doi":"10.1016/j.yebeh.2024.110031","DOIUrl":"10.1016/j.yebeh.2024.110031","url":null,"abstract":"<div><h3>Background</h3><p>The lifetime prevalence of epilepsy varies between 3.5 and 10.7 per 1000 individuals in developed countries, and from 0.9 to 74.4 per 1000 individuals in Asia, sub-Saharan Africa, and Latin America. In adolescents, the prevalence of epilepsy is estimated to be 1.5 to 2%.</p></div><div><h3>Purpose</h3><p>The purpose of this study was to examine the clinical characteristics of adolescents with epilepsy (AWE) and highlight the differences between childhood-onset epilepsy and adolescent-onset epilepsy. Additionally, the study aimed to assess the level of self-stigma and depression, as well as their impact on adherence to antiseizure medication (ASMs).</p></div><div><h3>Methods</h3><p>This cross-sectional study was conducted at the Epilepsy Clinic at Kasr Al-Ainy Hospitals. Patients underwent a thorough evaluation of their seizure history, as well as completed the Adherence to Refills and Medications Scale (ARMS), Kilifi Stigma Scale for Epilepsy (KSSE), and Patient Health Questionnaire-9 (PHQ-9) to assess depression.</p></div><div><h3>Results</h3><p>A total of 136 AWE were included in the study, consisting of 82 males and 54 females with a median age of 15 and an interquartile range of 13–17. Most patients (54 %) had focal onset seizures, while the remaining 46 % had generalized onset seizures. Of the total sample, 87 (64 %) achieved seizure control for at least one year and are currently taking ASMs. However, only 60 % of the patients were found to be adherent to their ASMs. Fourteen patients (17.2 %) met the criteria for drug-resistant epilepsy. Interestingly, patients with adolescent-onset epilepsy were significantly more adherent to their ASMs compared to those with childhood-onset epilepsy (P=0.01). Additionally, the adherent group had significantly lower scores on KSSE and PHQ-9 compared to the non-adherent group (P=&lt;0.0001 for each). Furthermore, there was a positive correlation between scores on the KSSE and PHQ-9 (P&lt;0.001).</p></div><div><h3>Conclusion</h3><p>Depression and self-stigma are significant barriers to adherence among adolescents with epilepsy. These findings highlight the need to involve psychiatrists and epileptologists in epilepsy transition programs.</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":"142271772","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":"Impact of seizure outcome and extent of neocortical resection on emotional well-being in patients with epilepsy one year after temporal lobe surgery","authors":"","doi":"10.1016/j.yebeh.2024.110061","DOIUrl":"10.1016/j.yebeh.2024.110061","url":null,"abstract":"<div><h3>Background</h3><div>Seizure frequency and cognitive function are common parameters in assessing epilepsy surgery outcomes. However, psychobehavioral outcomes, such as symptoms of depression and quality of life (QOL), have not found equal attention yet.</div></div><div><h3>Objective</h3><div>To assess the effect of seizure frequency, the extent of resection, and cognitive function on the psychobehavioral outcome of patients after temporal lobe surgery for pharmacoresistant epilepsy.</div></div><div><h3>Methods</h3><div>We retrospectively reviewed all consecutive patients who underwent surgery for intractable temporal lobe epilepsy between 09/2015 and 07/2019. We examined seizure outcome, surgical plan, resection volume, cognitive functions, and psychobehavioral outcome.</div></div><div><h3>Results</h3><div>This study included 77 patients (31 males, 46 females) who underwent temporal lobe surgery. One year after surgery, 53 patients (68.8 %) were completely seizure-free (Engel IA) and 92.2 % of patients showed a worthwhile improvement in seizure frequency (Engel I-III). Resection volume was significantly negatively correlated with QOL (<em>r</em> =  − 0.284, <em>p</em> = 0.041). However, after controlling for the effect of seizure outcome, no significant correlation remained. Patients with a worthwhile improvement in seizure frequency showed significantly fewer symptoms of depression (<em>p</em> = 0.024) and a significantly higher QOL (<em>p</em> = 0.012) one year after surgery. The differences in symptoms of depression (<em>p</em> = 0.044) and QOL (<em>p</em> = 0.030) between patients with and without improvements in seizure frequency remained significant after controlling for the effect of resection volume. After procedures sparing the amygdala and hippocampus (neocortical resection), patients presented significantly fewer symptoms of depression (<em>p</em> = 0.044) and significantly better QOL (<em>p</em> = 0.008) than patients after procedures involving mesial-temporal structures, independent of the resection volume, and after controlling for the side of the procedure (dominant vs. non-dominant). After also controlling for seizure outcome, the difference remained for QOL (<em>p</em> = 0.014) but not for symptoms of depression.</div></div><div><h3>Conclusions</h3><div>A patient’s emotional well-being one year after surgery for pharmacoresistant temporal lobe epilepsy strongly depends on their seizure outcome. As an individual factor, the extent of neocortical resection negatively affects postsurgical emotional well-being, but a favorable seizure outcome outweighs this effect, independent of the resection volume. A favorable seizure outcome even outweighs the negative effects of procedures involving mesial-temporal structures on symptoms of depression.</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":"https://www.sciencedirect.com/science/article/pii/S1525505024004438/pdfft?md5=89c237b03c7b36f0e41575c87a13d767&pid=1-s2.0-S1525505024004438-main.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142282323","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":"Transition from rectal to intranasal route among mostly pediatric patients with repeated prescriptions of rescue benzodiazepines for seizure emergencies","authors":"","doi":"10.1016/j.yebeh.2024.110038","DOIUrl":"10.1016/j.yebeh.2024.110038","url":null,"abstract":"<div><h3>Objective</h3><p>To describe the changes in Food and Drug Administration (FDA)-approved non-intravenous rescue benzodiazepine (non-IV-rBZD) use and cost after the introduction of intranasal midazolam and intranasal diazepam.</p></div><div><h3>Methods</h3><p>Retrospective descriptive study using the MarketScan Database between the years 2016 and 2022. We considered patients who had at least one non-IV-rBZD prescription before the introduction of intranasal rescue medications and at least one non-IV-rBZD prescription after the introduction of intranasal rescue medications.</p></div><div><h3>Results</h3><p>There were 4,444 patients (45.8 % female, median (p₂₅-p₇₅) age of 10.0 (5.0–15.0) years). 2,255 of 4,444 (50.7 %) patients switched from rectal diazepam to either intranasal midazolam (1,110 (25.0 %)) or intranasal diazepam (1,145 (25.8 %)) as their last non-IV-rBZD. The change from rectal to intranasal non-IV-rBZDs has been increasing over the years from 2019 to 2022. On multivariable analysis, having a non-IV-rBZD for epilepsy (rather than for other reasons including febrile seizures), the year of the last rescue medication, urban (non-rural) patient’s residence, and certain regions of the United States were the factors most strongly associated with a change from rectal diazepam to intranasal non-IV-rBZDs. After adjusting for inflation, the median (p₂₅-p₇₅) average wholesale price (AWP) of the last non-IV-rBZD was higher than that of the first non-IV-rBZD [702 (406–748) versus 417 (406–426), Wilcoxon signed rank test p &lt; 0.0001)]. This difference was mainly driven by the patients who changed from rectal diazepam to intranasal non-IV-rBZD [748 (714–755) versus 417 (406–426), Wilcoxon signed rank test p &lt; 0.0001)]. After adjusting for inflation, the median (p₂₅-p₇₅) patient cost of the last non-IV-rBZD was higher than that of the first non-IV-rBZD [16 (3–55) versus 12 (6–31), Wilcoxon signed rank test p &lt; 0.0001)]. This difference was mainly driven by the patients who changed from rectal diazepam to intranasal non-IV-rBZD [41 (6–83) versus 12 (6–30), Wilcoxon signed rank test p &lt; 0.0001)].</p></div><div><h3>Conclusion</h3><p>Approximately half of patients changed from rectal diazepam to intranasal midazolam or intranasal diazepam and that transition has been progressively increasing from the year 2019 to the year 2022. The inflation-adjusted AWP and patient cost increased, especially among those patients who changed from rectal to intranasal rescue medication.</p></div>","PeriodicalId":11847,"journal":{"name":"Epilepsy & Behavior","volume":null,"pages":null},"PeriodicalIF":2.3,"publicationDate":"2024-09-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142271809","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":"Novel approaches to measuring cognition in individuals with severe to profound functional impairment: A pilot study in SCN2A-related disorder","authors":"","doi":"10.1016/j.yebeh.2024.109975","DOIUrl":"10.1016/j.yebeh.2024.109975","url":null,"abstract":"<div><p>Valid clinical outcome assessments with the ability to capture meaningful aspects of neurodevelopment for individuals with neurogenetic conditions associated with profound functional impairments are lacking, yet critical for clinical care and clinical trial readiness. The purpose of this pilot study was to examine and compare the initial psychometric properties of a series of commonly used standardized and norm-referenced measures of cognition and adaptive functioning as well as alternative measures of neurobehavioral functioning designed to capture responsivity (i.e., alertness, awareness, responsivity to the environment) in those with acquired brain injuries in a sample of individuals with severe to profound functional impairment associated with a neurogenetic etiology. Ten individuals (median age = 7.5 years, IQR = 4.8–11.5, range 4–21; n = 8 male) with severe to profound functional impairment associated with <em>SCN2A</em>-Related Disorder and their parents were included in this study. Parents completed the Vineland Adaptive Behavior Scales, Third Edition Comprehensive Interview (Vineland-3) and the Developmental Profile, Fourth Edition Cognitive Scale (DP-4) and their children completed the Bayley Scales of Infant and Toddler Development Cognitive Scale (Bayley-4; given out of the standardized age-range) and two measures of responsivity, the Coma Recovery Scale, Pediatric and the Rappaport Coma/Near Coma Scale. Results demonstrated exceptionally low skills (median Vineland-3 Adaptive Behavior Composite = 35.5) and frequent floor effects across norm-referenced measures (i.e., Vineland-3, DP-4, Bayley-4); however, raw scores yielded more range and variability and no absolute floor effects. There were also no floor effects on measures of responsivity and findings suggest that these alternative tools may capture more variability in some aspects of neurobehavioral functioning that are critical to higher order cognitive functions, particularly for those with mental-ages below a 12 month-level. Initial evidence of construct validity of all measures in this population was shown. Findings support ongoing investigation of measures of responsivity and identified areas of potential measure modification that may improve applicability for individuals with severe to profound functional impairment associated with neurogenetic as opposed to acquired etiologies.</p></div>","PeriodicalId":11847,"journal":{"name":"Epilepsy & Behavior","volume":null,"pages":null},"PeriodicalIF":2.3,"publicationDate":"2024-09-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142273997","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}