Pub Date : 2025-10-01Epub Date: 2025-07-25DOI: 10.1212/CPJ.0000000000200517
Arathi S Nandyala, Kenneth Tan, Benjamin Africk, Anna Graber-Naidich, Niushen Zhang, Zihuai He, Leon S Moskatel
Background and objectives: The socioeconomic and demographic factors affecting the prescription of migraine medications are underexplored. Understanding these factors is critical to addressing health. We used our tertiary headache center's prescription database to assess the demographic and socioeconomic factors associated with the prescription of acute and preventive migraine medications and the factors affecting the rollout of novel migraine medications.
Methods: We performed a retrospective cohort analysis using aggregated deidentified data of patients who had received care through the Stanford Headache Clinic using data adapted from the Stanford deidentified instance of the Observational Medical Outcomes Partnership Common Data Model. We included patients in California who had received a diagnosis of chronic migraine and had received at least 1 prescription from our clinic between 2018 and 2022. The types and volumes of prescriptions were assessed, as well as demographic factors (age, sex, race ethnicity, and zip code income quartile).
Results: A total of 4,213 patients met inclusion criteria, of whom 3,349 (79.5%) were women and 863 (20.5%) were men, with a mean age of 44.6 ± 14.7 years. Our group was predominantly White and non-Hispanic/non-Latino (2,381/4213, 56.5%) and came from zip codes whose median income ranged from $77,250 to $236,912 (2046/3298, 62.0%). Age, sex, and race-ethnicity were all found to be statistically significant factors in the selection of both acute and preventive medications for patients. Zip code income quartile played a limited role in prescription variation for both acute and preventive medications. Race-ethnicity was also a statistically significant factor for those who received a prescription for a calcitonin gene-related peptide (CGRP) monoclonal antibody and a gepant. Similarly, sex, race-ethnicity, and zip code income quartile were all factors in the rollout of the CGRP monoclonal antibodies and gepants (all p < 0.05), but age was not (p = 0.722 and p = 0.057, respectively). The second and third zip code income quartiles had the lowest prescription rates of the CGRP monoclonal antibodies and gepants during their rollout.
Discussion: Disparities in sex, race-ethnicity, and zip code income quartile were found among those who received medications and which acute and preventive migraine medications were prescribed. This may reflect that some groups may have received less headache-specific care before establishing with our clinic. Future research will seek to better illuminate the underlying reasons for this more clearly to enable solutions and ensure equitable care.
{"title":"Socioeconomic Factors Associated With Migraine Medication Prescription at a Tertiary Headache Center: A Retrospective Cohort Analysis.","authors":"Arathi S Nandyala, Kenneth Tan, Benjamin Africk, Anna Graber-Naidich, Niushen Zhang, Zihuai He, Leon S Moskatel","doi":"10.1212/CPJ.0000000000200517","DOIUrl":"https://doi.org/10.1212/CPJ.0000000000200517","url":null,"abstract":"<p><strong>Background and objectives: </strong>The socioeconomic and demographic factors affecting the prescription of migraine medications are underexplored. Understanding these factors is critical to addressing health. We used our tertiary headache center's prescription database to assess the demographic and socioeconomic factors associated with the prescription of acute and preventive migraine medications and the factors affecting the rollout of novel migraine medications.</p><p><strong>Methods: </strong>We performed a retrospective cohort analysis using aggregated deidentified data of patients who had received care through the Stanford Headache Clinic using data adapted from the Stanford deidentified instance of the Observational Medical Outcomes Partnership Common Data Model. We included patients in California who had received a diagnosis of chronic migraine and had received at least 1 prescription from our clinic between 2018 and 2022. The types and volumes of prescriptions were assessed, as well as demographic factors (age, sex, race ethnicity, and zip code income quartile).</p><p><strong>Results: </strong>A total of 4,213 patients met inclusion criteria, of whom 3,349 (79.5%) were women and 863 (20.5%) were men, with a mean age of 44.6 ± 14.7 years. Our group was predominantly White and non-Hispanic/non-Latino (2,381/4213, 56.5%) and came from zip codes whose median income ranged from $77,250 to $236,912 (2046/3298, 62.0%). Age, sex, and race-ethnicity were all found to be statistically significant factors in the selection of both acute and preventive medications for patients. Zip code income quartile played a limited role in prescription variation for both acute and preventive medications. Race-ethnicity was also a statistically significant factor for those who received a prescription for a calcitonin gene-related peptide (CGRP) monoclonal antibody and a gepant. Similarly, sex, race-ethnicity, and zip code income quartile were all factors in the rollout of the CGRP monoclonal antibodies and gepants (all <i>p</i> < 0.05), but age was not (<i>p</i> = 0.722 and <i>p</i> = 0.057, respectively). The second and third zip code income quartiles had the lowest prescription rates of the CGRP monoclonal antibodies and gepants during their rollout.</p><p><strong>Discussion: </strong>Disparities in sex, race-ethnicity, and zip code income quartile were found among those who received medications and which acute and preventive migraine medications were prescribed. This may reflect that some groups may have received less headache-specific care before establishing with our clinic. Future research will seek to better illuminate the underlying reasons for this more clearly to enable solutions and ensure equitable care.</p>","PeriodicalId":19136,"journal":{"name":"Neurology. Clinical practice","volume":"15 5","pages":"e200517"},"PeriodicalIF":3.2,"publicationDate":"2025-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12307023/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144753895","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Background and objectives: Atypical psychosis, characterized by severe delusions, paranoia, and auditory or somatic hallucinations, is a notable complication of continuous subcutaneous infusion (CSCI) of foslevodopa/foscarbidopa therapy in Parkinson disease (PD). The aim of this study was to identify clinical predictors of CSCI-induced psychosis to understand its potential mechanisms and evaluate predictive measures for early detection and management.
Methods: This retrospective cohort study included patients with PD treated with CSCI (n = 23) and an independent PD database cohort (n = 94) from Osaka University Hospital. In the CSCI cohort, clinical data such as psychosis information and answers from Parkinson's Disease Questionnaire (PDQ39) and the Questionnaire for Impulsive-Compulsive Disorders in Parkinson's Disease-Current Symptoms (QUIP-CS) were collected. Statistical analyses included independent t tests and linear regression to identify predictors of atypical psychosis within a year of CSCI initiation. In the PD database cohort, potential relationships between QUIP-CS scores and other clinical parameters were explored using correlational analyses.
Results: Among the 23 patients, 6 developed atypical psychosis, all occurring within 6 months, with 4 of them discontinuing CSCI. Patients who developed atypical psychosis had significantly higher QUIP-CS scores before CSCI (adjusted p = 0.0032). Linear regression identified QUIP-CS as the sole predictor of atypical psychosis onset (coefficient = 0.199, p < 0.001). Among the PDQ39 subitems, item 27 showed a significant correlation with QUIP-CS scores (r = 0.722, adjusted p = 0.0128). Furthermore, a composite score comprising PDQ39 items 20, 27, 29, 31, and 36 (PDQ39_sub5) showed an even stronger correlation with QUIP-CS scores (r = 0.770, p = 0.0000704). This association was independently confirmed in the PD database cohort (r = 0.415, p = 0.00003). Finally, PDQ39_sub5 effectively stratified survival curves for psychosis onset in the CSCI cohort (p = 0.008).
Discussion: CSCI-induced psychosis is distinct from visual hallucinations observed in typical PD psychosis and likely involves mechanisms in mesolimbic circuits and impulsive-compulsive behaviors associated with dopamine dysregulation. While QUIP-CS is rarely used in clinical practice, widely used PDQ39_sub5 offers a practical way to identify individual psychosis risk. These findings potentially offer tailored strategies to predict and manage atypical psychosis in patients with PD receiving advanced dopaminergic therapies.
{"title":"Atypical Psychosis in Parkinson Disease: A Retrospective Study on 24-Hour Continuous Subcutaneous Infusion of Foslevodopa/Foscarbidopa.","authors":"Lindun Ge, Yasuyoshi Kimura, Keita Kakuda, Kotaro Ogawa, Yuta Kajiyama, Kanako Asai, Seira Taniguchi, Goichi Beck, Yoshiyuki Nishio, Jee Hyun Kim, Kensuke Ikenaka, Hideki Mochizuki","doi":"10.1212/CPJ.0000000000200534","DOIUrl":"10.1212/CPJ.0000000000200534","url":null,"abstract":"<p><strong>Background and objectives: </strong>Atypical psychosis, characterized by severe delusions, paranoia, and auditory or somatic hallucinations, is a notable complication of continuous subcutaneous infusion (CSCI) of foslevodopa/foscarbidopa therapy in Parkinson disease (PD). The aim of this study was to identify clinical predictors of CSCI-induced psychosis to understand its potential mechanisms and evaluate predictive measures for early detection and management.</p><p><strong>Methods: </strong>This retrospective cohort study included patients with PD treated with CSCI (n = 23) and an independent PD database cohort (n = 94) from Osaka University Hospital. In the CSCI cohort, clinical data such as psychosis information and answers from Parkinson's Disease Questionnaire (PDQ39) and the Questionnaire for Impulsive-Compulsive Disorders in Parkinson's Disease-Current Symptoms (QUIP-CS) were collected. Statistical analyses included independent <i>t</i> tests and linear regression to identify predictors of atypical psychosis within a year of CSCI initiation. In the PD database cohort, potential relationships between QUIP-CS scores and other clinical parameters were explored using correlational analyses.</p><p><strong>Results: </strong>Among the 23 patients, 6 developed atypical psychosis, all occurring within 6 months, with 4 of them discontinuing CSCI. Patients who developed atypical psychosis had significantly higher QUIP-CS scores before CSCI (adjusted <i>p</i> = 0.0032). Linear regression identified QUIP-CS as the sole predictor of atypical psychosis onset (coefficient = 0.199, <i>p</i> < 0.001). Among the PDQ39 subitems, item 27 showed a significant correlation with QUIP-CS scores (<i>r</i> = 0.722, adjusted <i>p</i> = 0.0128). Furthermore, a composite score comprising PDQ39 items 20, 27, 29, 31, and 36 (PDQ39_sub5) showed an even stronger correlation with QUIP-CS scores (<i>r</i> = 0.770, <i>p</i> = 0.0000704). This association was independently confirmed in the PD database cohort (<i>r</i> = 0.415, <i>p</i> = 0.00003). Finally, PDQ39_sub5 effectively stratified survival curves for psychosis onset in the CSCI cohort (<i>p</i> = 0.008).</p><p><strong>Discussion: </strong>CSCI-induced psychosis is distinct from visual hallucinations observed in typical PD psychosis and likely involves mechanisms in mesolimbic circuits and impulsive-compulsive behaviors associated with dopamine dysregulation. While QUIP-CS is rarely used in clinical practice, widely used PDQ39_sub5 offers a practical way to identify individual psychosis risk. These findings potentially offer tailored strategies to predict and manage atypical psychosis in patients with PD receiving advanced dopaminergic therapies.</p>","PeriodicalId":19136,"journal":{"name":"Neurology. Clinical practice","volume":"15 5","pages":"e200534"},"PeriodicalIF":3.2,"publicationDate":"2025-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12421908/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145040804","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-10-01Epub Date: 2025-08-11DOI: 10.1212/CPJ.0000000000200531
Jennifer P Rubin
{"title":"Consensus on Neuro-Irritability in Pediatric Patients: Why We All Need Palliative Care Skills.","authors":"Jennifer P Rubin","doi":"10.1212/CPJ.0000000000200531","DOIUrl":"10.1212/CPJ.0000000000200531","url":null,"abstract":"","PeriodicalId":19136,"journal":{"name":"Neurology. Clinical practice","volume":"15 5","pages":"e200531"},"PeriodicalIF":3.2,"publicationDate":"2025-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12342227/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144847964","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-10-01Epub Date: 2025-08-19DOI: 10.1212/CPJ.0000000000200521
Elena Pasini, Greta Mainieri, Irene Minardi, Serena Mazzone, Maria Tappatà, Lorenzo Muccioli, Francesca Bisulli, Federica Provini, Roberto Michelucci
Objectives: Lafora disease (LD) is a fatal progressive myoclonic epilepsy, characterized by disabling myoclonus, intractable seizures, and progressive cognitive decline. At the onset of symptoms, however, distinction from idiopathic generalized epilepsies may be difficult based on EEG because the background activity is typically preserved and the only abnormalities are rare generalized spike-and-wave discharges facilitated by the intermittent light stimulation. This underscores the urgent need for early biomarkers of the disease, particularly as disease-modifying therapies are being developed.
Methods: We describe the 24-month course of a patient with LD, whose older brother was similarly affected, followed up from the presymptomatic to overt disease stage. At each time point, the patient underwent neurologic, neuropsychological, and neurophysiologic evaluations, including an assessment of nocturnal sleep.
Results: During the first, presymptomatic assessment, when the patient was 13 years old, we documented generalized spike-and-wave discharges during rapid eye movement (REM) sleep, a very atypical finding for generalized idiopathic epilepsies, whereas wake EEG was substantially normal.
Discussion: This case study shows that neurophysiologic changes (wake and sleep EEG) showed early alterations even in the absence of motor and cognitive impairment, implying that an early diagnosis in patients with LD might have important implications for targeting future therapeutic strategies.
{"title":"Sleep and Awake EEG Findings in a Patient With Lafora Disease: From Presymptomatic to Overt Disease Stage.","authors":"Elena Pasini, Greta Mainieri, Irene Minardi, Serena Mazzone, Maria Tappatà, Lorenzo Muccioli, Francesca Bisulli, Federica Provini, Roberto Michelucci","doi":"10.1212/CPJ.0000000000200521","DOIUrl":"10.1212/CPJ.0000000000200521","url":null,"abstract":"<p><strong>Objectives: </strong>Lafora disease (LD) is a fatal progressive myoclonic epilepsy, characterized by disabling myoclonus, intractable seizures, and progressive cognitive decline. At the onset of symptoms, however, distinction from idiopathic generalized epilepsies may be difficult based on EEG because the background activity is typically preserved and the only abnormalities are rare generalized spike-and-wave discharges facilitated by the intermittent light stimulation. This underscores the urgent need for early biomarkers of the disease, particularly as disease-modifying therapies are being developed.</p><p><strong>Methods: </strong>We describe the 24-month course of a patient with LD, whose older brother was similarly affected, followed up from the presymptomatic to overt disease stage. At each time point, the patient underwent neurologic, neuropsychological, and neurophysiologic evaluations, including an assessment of nocturnal sleep.</p><p><strong>Results: </strong>During the first, presymptomatic assessment, when the patient was 13 years old, we documented generalized spike-and-wave discharges during rapid eye movement (REM) sleep, a very atypical finding for generalized idiopathic epilepsies, whereas wake EEG was substantially normal.</p><p><strong>Discussion: </strong>This case study shows that neurophysiologic changes (wake and sleep EEG) showed early alterations even in the absence of motor and cognitive impairment, implying that an early diagnosis in patients with LD might have important implications for targeting future therapeutic strategies.</p>","PeriodicalId":19136,"journal":{"name":"Neurology. Clinical practice","volume":"15 5","pages":"e200521"},"PeriodicalIF":3.2,"publicationDate":"2025-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12366030/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144962593","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-10-01Epub Date: 2025-08-22DOI: 10.1212/CPJ.0000000000200522
Naomi Niznick, Hanna Tang, Julie Kromm, Victoria A McCredie, Miguel Alejandro Arevalo Astrada, Jay R Gavvala, Marcus C Ng, Tadeu A Fantaneanu
Background and objectives: Continuous EEG (cEEG) is the gold standard for diagnosing nonconvulsive seizures (NCSs) and nonconvulsive status epilepticus (NCSE) in critically ill patients, with NCSE occurring in 8%-10% of patients with unexplained coma. Untreated NCSs are associated with secondary brain injury, as well as increased mortality and morbidity. cEEG monitoring allows clinicians to identify more than twice the number of seizures compared with a 30-min routine EEG recording. However, there are limited data on cEEG practices in Canadian hospitals. The aim of this study was to evaluate the availability, indications, and barriers to cEEG access in Canada.
Methods: A national cross-sectional survey was distributed to EEG laboratory directors and physicians who interpret cEEGs to assess cEEG monitoring practices in Canadian adult hospitals. The survey evaluated institutional cEEG availability, clinical applications, and technical infrastructure.
Results: Among 1,267 adult hospitals in Canada, only 92 hospital networks (9%) were identified as having an EEG laboratory. Twenty-four were identified as potentially offering cEEG monitoring, and a survey was sent to a physician at these institutions. Responses were received from 22 institutions (92% response rate), with 19 hospital networks reporting cEEG availability-representing just 2% of Canadian hospitals. Geographic disparities were significant, with 3 provinces and all 3 territories lacking cEEG access. Among tertiary care hospitals, only 68% reported cEEG availability. Barriers included insufficient EEG technologist coverage and prolonged processing periods for 24-hour EEG recordings. Most institutions lacked standardized guidelines, were unable to perform new cEEG hookups after regular work hours, and did not have access to abbreviated montages when cEEG was unavailable.
Discussion: cEEG availability in Canada is highly limited, including at tertiary care centers, with significant geographic inequities and operational barriers. Most Canadian hospitals do not meet guideline standards for cEEG use. These findings highlight the need for systemic changes to improve cEEG access and align Canadian cEEG practices with international standards.
{"title":"Continuous EEG Monitoring in Canadian Hospitals: A Nationwide Cross-Sectional Survey.","authors":"Naomi Niznick, Hanna Tang, Julie Kromm, Victoria A McCredie, Miguel Alejandro Arevalo Astrada, Jay R Gavvala, Marcus C Ng, Tadeu A Fantaneanu","doi":"10.1212/CPJ.0000000000200522","DOIUrl":"10.1212/CPJ.0000000000200522","url":null,"abstract":"<p><strong>Background and objectives: </strong>Continuous EEG (cEEG) is the gold standard for diagnosing nonconvulsive seizures (NCSs) and nonconvulsive status epilepticus (NCSE) in critically ill patients, with NCSE occurring in 8%-10% of patients with unexplained coma. Untreated NCSs are associated with secondary brain injury, as well as increased mortality and morbidity. cEEG monitoring allows clinicians to identify more than twice the number of seizures compared with a 30-min routine EEG recording. However, there are limited data on cEEG practices in Canadian hospitals. The aim of this study was to evaluate the availability, indications, and barriers to cEEG access in Canada.</p><p><strong>Methods: </strong>A national cross-sectional survey was distributed to EEG laboratory directors and physicians who interpret cEEGs to assess cEEG monitoring practices in Canadian adult hospitals. The survey evaluated institutional cEEG availability, clinical applications, and technical infrastructure.</p><p><strong>Results: </strong>Among 1,267 adult hospitals in Canada, only 92 hospital networks (9%) were identified as having an EEG laboratory. Twenty-four were identified as potentially offering cEEG monitoring, and a survey was sent to a physician at these institutions. Responses were received from 22 institutions (92% response rate), with 19 hospital networks reporting cEEG availability-representing just 2% of Canadian hospitals. Geographic disparities were significant, with 3 provinces and all 3 territories lacking cEEG access. Among tertiary care hospitals, only 68% reported cEEG availability. Barriers included insufficient EEG technologist coverage and prolonged processing periods for 24-hour EEG recordings. Most institutions lacked standardized guidelines, were unable to perform new cEEG hookups after regular work hours, and did not have access to abbreviated montages when cEEG was unavailable.</p><p><strong>Discussion: </strong>cEEG availability in Canada is highly limited, including at tertiary care centers, with significant geographic inequities and operational barriers. Most Canadian hospitals do not meet guideline standards for cEEG use. These findings highlight the need for systemic changes to improve cEEG access and align Canadian cEEG practices with international standards.</p>","PeriodicalId":19136,"journal":{"name":"Neurology. Clinical practice","volume":"15 5","pages":"e200522"},"PeriodicalIF":3.2,"publicationDate":"2025-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12377918/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144962565","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-10-01Epub Date: 2025-09-04DOI: 10.1212/CPJ.0000000000200520
Matthew Ryan Woodward, Jessica P Brown, Steven J Kittner, Neeraj Badjatia, Emily J Gilmore, Emily L Johnson, Nicholas A Morris
Background and objectives: Guidelines for super-refractory status epilepticus (SRSE) evaluation, management, and prognostication are lacking. Characterization of practice patterns could identify trends and potential areas for future inquiry. We surveyed clinicians who manage SRSE to better understand practice approaches to SRSE evaluation, management, and prognostication.
Methods: We conducted an international cross-sectional 66-question, web-based survey of clinicians who manage SRSE, distributed through 4 scientific societies from August 3, 2023, through January 25, 2024. We collected data regarding SRSE diagnostics and management. We examined prognostic approaches based on 2 clinical vignettes. We characterized responses using descriptive statistics and developed logistic regression models to identify key factors associated with prognostication.
Results: Of 245 participants, 36 were excluded because of no clinical involvement with SRSE and 209 were included; 41 (20%), 66 (32%), and 84 (40%) participants were neurologists, neurointensivists, and general intensivists, respectively, 83% of whom practiced in the United States. For IV anesthetic treatment, midazolam (n = 47, 38%) and propofol (n = 42, 34%) were most often selected as first line while ketamine was most often 2nd (n = 34, 26%) or 3rd (n = 52, 41%) line. Regarding electroencephalography targets for IV treatment, burst suppression (n = 96, 47%) or seizure suppression (n = 70, 34%) was most popular. This goal was maintained for a median of 49.5 hours (interquartile range 29.8-74 hours) before weaning. Regarding prognostication, of 147 respondents, 75 (51%) reported an ability to predict favorable prognosis, which was associated with neurology (OR: 4.4, 95% CI 1.5-13.5) or general intensivist (OR: 4.6, 95% CI 1.6-14) practice vs neurocritical care (reference, fewer than 5 years of experience (OR: 3.9, 95% CI 1.6-10); higher annual SRSE case load (OR: 2.9, 95% CI 1.7-7.3); and use of clinical severity scores (OR: 4.7, 95% CI 2-11.4). Time to determine futility and recommendations for withdrawal of life-sustaining therapy (WLST) followed bimodal distributions, with early (0-4 weeks) and delayed (26 weeks) modes. Prognostic optimism was associated with delayed determination of futility and recommendation for WLST (OR: 6.2, 95% CI 2.2-19.3).
Discussion: There is significant variability in the evaluation and management of SRSE, including treatment preferences, targets, and duration of therapy. Prognostication is associated with multiple clinician-related factors. The timing of prognostication is highly variable and is associated with clinician optimism.
背景和目的:目前缺乏超难治性癫痫持续状态(SRSE)的评估、管理和预后指南。对实践模式的描述可以确定未来调查的趋势和潜在领域。我们调查了管理SRSE的临床医生,以更好地了解SRSE评估、管理和预测的实践方法。方法:从2023年8月3日至2024年1月25日,我们对管理SRSE的临床医生进行了一项国际性的、包含66个问题的网络调查。我们收集了有关SRSE诊断和管理的数据。我们根据2个临床小插曲检查了预后方法。我们使用描述性统计和开发逻辑回归模型来确定与预测相关的关键因素。结果:245名受试者中,36名因无SRSE临床表现而被排除,209名被纳入;41名(20%)、66名(32%)和84名(40%)参与者分别是神经科医生、神经强化医生和普通强化医生,其中83%在美国执业。静脉麻醉治疗以咪达唑仑(n = 47, 38%)和异丙酚(n = 42, 34%)为一线,氯胺酮为二线(n = 34, 26%)和三线(n = 52, 41%)。关于静脉治疗的脑电图目标,爆发抑制(n = 96, 47%)或癫痫抑制(n = 70, 34%)最常见。这一目标在断奶前的中位数维持了49.5小时(四分位数范围为29.8-74小时)。关于预后,147名应答者中,75名(51%)报告了预测良好预后的能力,这与神经病学(OR: 4.4, 95% CI 1.5-13.5)或普通重症医师(OR: 4.6, 95% CI 1.6-14)实践与神经危重症护理(参考,少于5年的经验(OR: 3.9, 95% CI 1.6-10)有关;较高的年度SRSE病例负荷(OR: 2.9, 95% CI 1.7-7.3);使用临床严重程度评分(OR: 4.7, 95% CI 2-11.4)。确定无效的时间和建议停止生命维持治疗(WLST)遵循双峰分布,早期(0-4周)和延迟(26周)模式。预后乐观与延迟确定无效和推荐WLST相关(OR: 6.2, 95% CI 2.2-19.3)。讨论:在SRSE的评估和管理方面存在显著的可变性,包括治疗偏好、目标和治疗持续时间。预后与多种临床相关因素有关。预测的时间是高度可变的,并且与临床医生的乐观态度有关。
{"title":"Super-Refractory Status Epilepticus Diagnosis, Management, and Prognostication: An International Survey Study.","authors":"Matthew Ryan Woodward, Jessica P Brown, Steven J Kittner, Neeraj Badjatia, Emily J Gilmore, Emily L Johnson, Nicholas A Morris","doi":"10.1212/CPJ.0000000000200520","DOIUrl":"10.1212/CPJ.0000000000200520","url":null,"abstract":"<p><strong>Background and objectives: </strong>Guidelines for super-refractory status epilepticus (SRSE) evaluation, management, and prognostication are lacking. Characterization of practice patterns could identify trends and potential areas for future inquiry. We surveyed clinicians who manage SRSE to better understand practice approaches to SRSE evaluation, management, and prognostication.</p><p><strong>Methods: </strong>We conducted an international cross-sectional 66-question, web-based survey of clinicians who manage SRSE, distributed through 4 scientific societies from August 3, 2023, through January 25, 2024. We collected data regarding SRSE diagnostics and management. We examined prognostic approaches based on 2 clinical vignettes. We characterized responses using descriptive statistics and developed logistic regression models to identify key factors associated with prognostication.</p><p><strong>Results: </strong>Of 245 participants, 36 were excluded because of no clinical involvement with SRSE and 209 were included; 41 (20%), 66 (32%), and 84 (40%) participants were neurologists, neurointensivists, and general intensivists, respectively, 83% of whom practiced in the United States. For IV anesthetic treatment, midazolam (n = 47, 38%) and propofol (n = 42, 34%) were most often selected as first line while ketamine was most often 2nd (n = 34, 26%) or 3rd (n = 52, 41%) line. Regarding electroencephalography targets for IV treatment, burst suppression (n = 96, 47%) or seizure suppression (n = 70, 34%) was most popular. This goal was maintained for a median of 49.5 hours (interquartile range 29.8-74 hours) before weaning. Regarding prognostication, of 147 respondents, 75 (51%) reported an ability to predict favorable prognosis, which was associated with neurology (OR: 4.4, 95% CI 1.5-13.5) or general intensivist (OR: 4.6, 95% CI 1.6-14) practice vs neurocritical care (reference, fewer than 5 years of experience (OR: 3.9, 95% CI 1.6-10); higher annual SRSE case load (OR: 2.9, 95% CI 1.7-7.3); and use of clinical severity scores (OR: 4.7, 95% CI 2-11.4). Time to determine futility and recommendations for withdrawal of life-sustaining therapy (WLST) followed bimodal distributions, with early (0-4 weeks) and delayed (26 weeks) modes. Prognostic optimism was associated with delayed determination of futility and recommendation for WLST (OR: 6.2, 95% CI 2.2-19.3).</p><p><strong>Discussion: </strong>There is significant variability in the evaluation and management of SRSE, including treatment preferences, targets, and duration of therapy. Prognostication is associated with multiple clinician-related factors. The timing of prognostication is highly variable and is associated with clinician optimism.</p>","PeriodicalId":19136,"journal":{"name":"Neurology. Clinical practice","volume":"15 5","pages":"e200520"},"PeriodicalIF":3.2,"publicationDate":"2025-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12413177/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145015865","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-10-01Epub Date: 2025-09-04DOI: 10.1212/CPJ.0000000000200533
Parneet Grewal, Jane B Allendorfer, Mathew J Gregoski, Natasha Frost, Neishay Ayub, Christa O'Hana S Nobleza, Myriam Abdennadher, Doris Kung, Suma Shah, Halley B Alexander, Kamala Rodrigues, Sarah Durica, Seema Nagpal, June Yoshii-Contreras, Katherine Zarroli, Padmaja Sudhakar, Chen Zhao, Sol De Jesus, Deborah Young Bradshaw, Nicole Brescia, Nancy Foldvary-Schaefer, Laura M Tormoehlen, Laurie Gutmann, Sneha Mantri, Ailing Eileen Yang, Annie He, Cynthia Zheng, Neil A Busis, Julie K Silver, Alyssa F Westring, Sima Patel, Sasha Alick-Lindstrom
Background and objectives: With more women entering the medical workforce, caregiving challenges and family-work conflicts are of growing importance to today's neurologists. The aim of this study was to assess the impact of caregiver (CG) status on academic achievements in neurology, analyze the division of labor and time devoted to domestic responsibilities, and measure family-work conflict in US academic neurology faculty.
Methods: A total of 19 US neurology departments completed a survey on baseline demographics, academic achievements, CG status, division of domestic time and labor, and responses on a FWC scale. Variables were assessed using independent samples t tests (or Mann-Whitney U for non-normally distributed data) and X2 analyses as appropriate, with CGs vs noncaregivers (N-CGs) serving as the independent groups.
Results: Women were twice as likely as men to categorize themselves as caregivers (p = 0.005). There were no significant differences in academic achievements between the CG and N-CG groups. However, CG men had a statistically significantly higher number of leadership positions (p = 0.022), number of publications as first or last author (p = 0.020), and number of awards (p = 0.004) when compared with CG women. The percentage of CG women faculty who reported spending more than 22 hours per week on child care was significantly higher than that of CG men (p = 0.003). Caregiver women also reported doing more work at home; taking care of children when they are sick; taking days off work when children are sick; handling more chores related to child care (e.g., managing activities/schedules); and doing laundry, cooking, and cleaning related to child care. Finally, the CG group experienced a higher level of FWC, as evidenced by responses on the FWC scale (p < 0.001). This finding was same for CG women compared with CG men (p = 0.034).
Discussion: Although the caregiving burden did not directly affect academic productivity, it significantly increased FWC in US academic neurology faculty surveyed. Female CG faculty disproportionately shouldered domestic and household responsibilities. Beyond recognizing CG challenges, advocating for a change in paradigm and providing solutions to these pervasive issues could be instrumental in preventing further attrition of professionals from our field, particularly women with caregiving roles.
{"title":"Impact of Caregiver Status on Academic Achievements and Family-Work Conflict: A Cross-Sectional Analysis of US Neurology Faculty.","authors":"Parneet Grewal, Jane B Allendorfer, Mathew J Gregoski, Natasha Frost, Neishay Ayub, Christa O'Hana S Nobleza, Myriam Abdennadher, Doris Kung, Suma Shah, Halley B Alexander, Kamala Rodrigues, Sarah Durica, Seema Nagpal, June Yoshii-Contreras, Katherine Zarroli, Padmaja Sudhakar, Chen Zhao, Sol De Jesus, Deborah Young Bradshaw, Nicole Brescia, Nancy Foldvary-Schaefer, Laura M Tormoehlen, Laurie Gutmann, Sneha Mantri, Ailing Eileen Yang, Annie He, Cynthia Zheng, Neil A Busis, Julie K Silver, Alyssa F Westring, Sima Patel, Sasha Alick-Lindstrom","doi":"10.1212/CPJ.0000000000200533","DOIUrl":"10.1212/CPJ.0000000000200533","url":null,"abstract":"<p><strong>Background and objectives: </strong>With more women entering the medical workforce, caregiving challenges and family-work conflicts are of growing importance to today's neurologists. The aim of this study was to assess the impact of caregiver (CG) status on academic achievements in neurology, analyze the division of labor and time devoted to domestic responsibilities, and measure family-work conflict in US academic neurology faculty.</p><p><strong>Methods: </strong>A total of 19 US neurology departments completed a survey on baseline demographics, academic achievements, CG status, division of domestic time and labor, and responses on a FWC scale. Variables were assessed using independent samples <i>t</i> tests (or Mann-Whitney U for non-normally distributed data) and X<sup>2</sup> analyses as appropriate, with CGs vs noncaregivers (N-CGs) serving as the independent groups.</p><p><strong>Results: </strong>Women were twice as likely as men to categorize themselves as caregivers (<i>p</i> = 0.005). There were no significant differences in academic achievements between the CG and N-CG groups. However, CG men had a statistically significantly higher number of leadership positions (<i>p</i> = 0.022), number of publications as first or last author (<i>p</i> = 0.020), and number of awards (<i>p</i> = 0.004) when compared with CG women. The percentage of CG women faculty who reported spending more than 22 hours per week on child care was significantly higher than that of CG men (<i>p</i> = 0.003). Caregiver women also reported doing more work at home; taking care of children when they are sick; taking days off work when children are sick; handling more chores related to child care (e.g., managing activities/schedules); and doing laundry, cooking, and cleaning related to child care. Finally, the CG group experienced a higher level of FWC, as evidenced by responses on the FWC scale (<i>p</i> < 0.001). This finding was same for CG women compared with CG men (<i>p</i> = 0.034).</p><p><strong>Discussion: </strong>Although the caregiving burden did not directly affect academic productivity, it significantly increased FWC in US academic neurology faculty surveyed. Female CG faculty disproportionately shouldered domestic and household responsibilities. Beyond recognizing CG challenges, advocating for a change in paradigm and providing solutions to these pervasive issues could be instrumental in preventing further attrition of professionals from our field, particularly women with caregiving roles.</p>","PeriodicalId":19136,"journal":{"name":"Neurology. Clinical practice","volume":"15 5","pages":"e200533"},"PeriodicalIF":3.2,"publicationDate":"2025-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12413178/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145015909","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-10-01Epub Date: 2025-08-06DOI: 10.1212/CPJ.0000000000200487
Gregory J Esper, Lavanya Muthukumar, Evan Lee Reynolds, Chloe E Hill, Chun Chieh Lin, Laura Belsinger, Kristin Cooper, Brian C Callaghan
Background and objectives: To determine downstream revenue of neurologists compared with nonneurologists after incident diagnostic visits by analysis of Medicare claims.
Methods: Using 20% randomly selected and nationally representative sample of claims from Medicare insured patients between 2015 and 2019, we identified patients with multiple sclerosis (MS), Parkinson disease (PD), epilepsy or other seizures, dementia, and autoimmune neuromuscular diseases who had a new or follow-up evaluation and management (E/M) encounter for care with a neurologist (cases) in the outpatient, inpatient, or emergency settings. Using 1:1 propensity score matching with variables including demographics, comorbidities, and indicators of social determinants of health to identify index encounters for the same diagnoses with nonneurologists (controls), we compared generation of downstream revenues from services including E/M visits, infusion, procedures, durable medical equipment, and inpatient care up to 1 year after the index visit including medication.
Results: Total revenues were higher in cases than controls for all groups including autoimmune neuromuscular diseases (+519%, $58,694,251 vs $9,482,866), followed by epilepsy or other seizures (+152%, $297,126,099 vs $117,962,482), MS (+77%, $31,820,922 vs $17,991,539), dementia (+30%, $100,152,203 vs $76,934,093), and PD (+30%, $64,619,112 vs $49,694,105) Reimbursement per patient was the largest for autoimmune neuromuscular conditions (cases mean: $18,722, SD: $44,085; controls mean: $3,025, SD $17,642), followed by MS (cases mean: $9,496, SD: $22,490; controls mean $5,369, SD $15,993), epilepsy or other seizures (cases mean: $8,388, SD: $22,183; controls mean $3,330, SD $13,249), PD (cases mean: $8,193, SD: $19,867; controls mean $6,301, SD $17,341), and dementia (cases mean: $2,209, SD: $8,655; controls mean $1,697, SD $7,715). Inpatient admissions generated the most downstream revenue, followed by procedures in PD, epilepsy or other seizures, and dementia and medication infusions in MS and autoimmune neuromuscular disease. Neurologist attributable reimbursement was minimal compared with reimbursement for other specialties when accounting for all revenues.
Discussion: Compared with nonneurologists, neurologists guide diagnostic evaluation and treatment generating significantly greater downstream revenue after the incident diagnosis of 5 neurologic disorders including MS, PD, epilepsy or other seizures, dementia, and autoimmune neuromuscular conditions. These findings underscore the clinical and financial worth of neurologists to health systems providing specialty and subspecialty care for neurologic disorders.
{"title":"Downstream Revenue Generated After Visits to Neurologists: A Claims-Based Analysis of Medicare Data.","authors":"Gregory J Esper, Lavanya Muthukumar, Evan Lee Reynolds, Chloe E Hill, Chun Chieh Lin, Laura Belsinger, Kristin Cooper, Brian C Callaghan","doi":"10.1212/CPJ.0000000000200487","DOIUrl":"https://doi.org/10.1212/CPJ.0000000000200487","url":null,"abstract":"<p><strong>Background and objectives: </strong>To determine downstream revenue of neurologists compared with nonneurologists after incident diagnostic visits by analysis of Medicare claims.</p><p><strong>Methods: </strong>Using 20% randomly selected and nationally representative sample of claims from Medicare insured patients between 2015 and 2019, we identified patients with multiple sclerosis (MS), Parkinson disease (PD), epilepsy or other seizures, dementia, and autoimmune neuromuscular diseases who had a new or follow-up evaluation and management (E/M) encounter for care with a neurologist (cases) in the outpatient, inpatient, or emergency settings. Using 1:1 propensity score matching with variables including demographics, comorbidities, and indicators of social determinants of health to identify index encounters for the same diagnoses with nonneurologists (controls), we compared generation of downstream revenues from services including E/M visits, infusion, procedures, durable medical equipment, and inpatient care up to 1 year after the index visit including medication.</p><p><strong>Results: </strong>Total revenues were higher in cases than controls for all groups including autoimmune neuromuscular diseases (+519%, $58,694,251 vs $9,482,866), followed by epilepsy or other seizures (+152%, $297,126,099 vs $117,962,482), MS (+77%, $31,820,922 vs $17,991,539), dementia (+30%, $100,152,203 vs $76,934,093), and PD (+30%, $64,619,112 vs $49,694,105) Reimbursement per patient was the largest for autoimmune neuromuscular conditions (cases mean: $18,722, SD: $44,085; controls mean: $3,025, SD $17,642), followed by MS (cases mean: $9,496, SD: $22,490; controls mean $5,369, SD $15,993), epilepsy or other seizures (cases mean: $8,388, SD: $22,183; controls mean $3,330, SD $13,249), PD (cases mean: $8,193, SD: $19,867; controls mean $6,301, SD $17,341), and dementia (cases mean: $2,209, SD: $8,655; controls mean $1,697, SD $7,715). Inpatient admissions generated the most downstream revenue, followed by procedures in PD, epilepsy or other seizures, and dementia and medication infusions in MS and autoimmune neuromuscular disease. Neurologist attributable reimbursement was minimal compared with reimbursement for other specialties when accounting for all revenues.</p><p><strong>Discussion: </strong>Compared with nonneurologists, neurologists guide diagnostic evaluation and treatment generating significantly greater downstream revenue after the incident diagnosis of 5 neurologic disorders including MS, PD, epilepsy or other seizures, dementia, and autoimmune neuromuscular conditions. These findings underscore the clinical and financial worth of neurologists to health systems providing specialty and subspecialty care for neurologic disorders.</p>","PeriodicalId":19136,"journal":{"name":"Neurology. Clinical practice","volume":"15 5","pages":"e200487"},"PeriodicalIF":3.2,"publicationDate":"2025-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12333866/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144817211","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-10-01Epub Date: 2025-08-28DOI: 10.1212/CPJ.0000000000200529
Maya R Silver, Laurel Caffeé, Lawrence E Fried, Alexander K Gonzalez, Rachael Huber, Michael C Kaufman, Margaret Means, Neil Patel, Mark Ramos, Stephanie Witzman, Katelyn Beam, Jessica Zook, Nicholas S Abend, Craig Press, Sara Molisani
Background and objectives: Seizure rescue medications are commonly prescribed to patients with epilepsy to treat and prevent clusters of seizures or status epilepticus. Underdosing of rescue medications decreases their efficacy, which may lead to status epilepticus and potentially avoidable emergency department (ED) visits or hospitalizations. In this quality improvement initiative, we aimed to reduce the rate of underdosed rectal diazepam prescriptions for children discharged from the inpatient neurology service at our institution from a baseline of 6% to 3% by July 2023.
Methods: The primary intervention was an order panel in the electronic health record that automated selection of correct dosing for age-based and weight-based seizure rescue medications including rectal diazepam, intranasal diazepam, and intranasal midazolam. A statistical process control p-chart was used to analyze our primary outcome measure, the monthly rate of underdosed rectal diazepam prescriptions for patients discharged from the inpatient neurology service. The process measure was use of the new order panel. Balancing measures included the dispense rate, cost for seizure rescue medications, and provider satisfaction.
Results: During the baseline period, July 2020-August 2022, rectal diazepam was underdosed for 6% of patients discharged from the neurology service. After intervention, we achieved and sustained 0% underdosing of rectal diazepam. We observed no concerning changes in the dispense rate for the medications, the average copay cost remained low, and surveys of ordering providers showed overall high rates of satisfaction. By spreading the intervention, we reduced underdosing from 21% to 0.6% in the ED and from 12% to 4% across the health care system.
Discussion: An order panel that automated selection of correct dosing effectively and sustainably reduced underdosing of seizure rescue medications and is transferrable across care settings. We expect that proper dosing of seizure rescue medications should reduce the occurrence of status epilepticus and associated complications.
{"title":"A Quality Improvement Initiative to Reduce Underdosing of Rectal Diazepam as Home Seizure Rescue Medication After Hospitalization.","authors":"Maya R Silver, Laurel Caffeé, Lawrence E Fried, Alexander K Gonzalez, Rachael Huber, Michael C Kaufman, Margaret Means, Neil Patel, Mark Ramos, Stephanie Witzman, Katelyn Beam, Jessica Zook, Nicholas S Abend, Craig Press, Sara Molisani","doi":"10.1212/CPJ.0000000000200529","DOIUrl":"10.1212/CPJ.0000000000200529","url":null,"abstract":"<p><strong>Background and objectives: </strong>Seizure rescue medications are commonly prescribed to patients with epilepsy to treat and prevent clusters of seizures or status epilepticus. Underdosing of rescue medications decreases their efficacy, which may lead to status epilepticus and potentially avoidable emergency department (ED) visits or hospitalizations. In this quality improvement initiative, we aimed to reduce the rate of underdosed rectal diazepam prescriptions for children discharged from the inpatient neurology service at our institution from a baseline of 6% to 3% by July 2023.</p><p><strong>Methods: </strong>The primary intervention was an order panel in the electronic health record that automated selection of correct dosing for age-based and weight-based seizure rescue medications including rectal diazepam, intranasal diazepam, and intranasal midazolam. A statistical process control p-chart was used to analyze our primary outcome measure, the monthly rate of underdosed rectal diazepam prescriptions for patients discharged from the inpatient neurology service. The process measure was use of the new order panel. Balancing measures included the dispense rate, cost for seizure rescue medications, and provider satisfaction.</p><p><strong>Results: </strong>During the baseline period, July 2020-August 2022, rectal diazepam was underdosed for 6% of patients discharged from the neurology service. After intervention, we achieved and sustained 0% underdosing of rectal diazepam. We observed no concerning changes in the dispense rate for the medications, the average copay cost remained low, and surveys of ordering providers showed overall high rates of satisfaction. By spreading the intervention, we reduced underdosing from 21% to 0.6% in the ED and from 12% to 4% across the health care system.</p><p><strong>Discussion: </strong>An order panel that automated selection of correct dosing effectively and sustainably reduced underdosing of seizure rescue medications and is transferrable across care settings. We expect that proper dosing of seizure rescue medications should reduce the occurrence of status epilepticus and associated complications.</p>","PeriodicalId":19136,"journal":{"name":"Neurology. Clinical practice","volume":"15 5","pages":"e200529"},"PeriodicalIF":3.2,"publicationDate":"2025-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12396600/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144962601","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-10-01Epub Date: 2025-08-28DOI: 10.1212/CPJ.0000000000200527
Daniel Karlin, Joanna Smolenski, Daniel Edward Callies, Joseph A Raho
Patients with locked-in syndrome (LIS) pose unique ethical challenges for decision making, given the complexities of communication. However, some of these patients may retain the ability to participate in decisions regarding their care, including whether to continue life-sustaining treatment or pursue comfort care only. Following a deidentified case, this article has 2 central aims. First, it examines the ethical foundations of decision making and the complexities of capacity assessments for this patient population. Second, it offers a practical guide for neurologists to use when making such evaluations. This guide facilitates a way of communicating with patients with LIS so that clinicians may more systematically assess the patient's capacity to make their own consequential medical decisions.
{"title":"Assessing Capacity and Exploring Goals of Care in Locked-In Syndrome: A Clinician's Guide.","authors":"Daniel Karlin, Joanna Smolenski, Daniel Edward Callies, Joseph A Raho","doi":"10.1212/CPJ.0000000000200527","DOIUrl":"10.1212/CPJ.0000000000200527","url":null,"abstract":"<p><p>Patients with locked-in syndrome (LIS) pose unique ethical challenges for decision making, given the complexities of communication. However, some of these patients may retain the ability to participate in decisions regarding their care, including whether to continue life-sustaining treatment or pursue comfort care only. Following a deidentified case, this article has 2 central aims. First, it examines the ethical foundations of decision making and the complexities of capacity assessments for this patient population. Second, it offers a practical guide for neurologists to use when making such evaluations. This guide facilitates a way of communicating with patients with LIS so that clinicians may more systematically assess the patient's capacity to make their own consequential medical decisions.</p>","PeriodicalId":19136,"journal":{"name":"Neurology. Clinical practice","volume":"15 5","pages":"e200527"},"PeriodicalIF":3.2,"publicationDate":"2025-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12396601/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144962538","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}