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Provider Experiences With Systematically Administered Patient-Reported Outcome Measures in Multiple Sclerosis: A Qualitative Sub-Study. 在多发性硬化症中系统管理的患者报告结果测量的提供者经验:一个定性的子研究。
IF 2.3 Q3 CLINICAL NEUROLOGY Pub Date : 2025-08-01 Epub Date: 2025-07-11 DOI: 10.1212/CPJ.0000000000200486
Nathan Y Chu, Aila Jamali, Yazid N Al Hamarneh, Kaitlyn E Watson, Ross T Tsuyuki, Penelope S Smyth

Background and objectives: There has been interest in using patient-reported outcome measures (PROMs) to capture and systematically assess patients' perceptions of their multiple sclerosis (MS) experience and feed this information back to the clinician, but PROMs are not routinely used in MS outpatient clinics. We explored the perspectives of providers caring for persons with MS (PwMS) on the integration of PROMs into clinical practice.

Methods: This was a qualitative substudy of a separate randomized controlled trial (ClinicalTrials.gov: NCT0497954) examining the effect of PROM use on depression and anxiety levels in PwMS. We conducted semistructured interviews with 10 providers caring for participants enrolled in the study and explored their experiences using PROMs with PwMS. Thematic analysis through a mixed inductive and deductive approach was performed using verbatim interview transcriptions.

Results: Seven neurologists, 2 specialty MS nurse practitioners, and 1 MS registered nurse were interviewed. Providers expressed several facilitating factors with PROM usage, including engaging with patient-specific symptoms, initiating patient goal setting, and improving visit efficiency and patient satisfaction. However, providers also expressed barriers such as clinical workflow disruptions and technological barriers, skepticism toward the validity of results, and moral/ethical obligations to information gained from PROMs. Future opportunities elicited were the introduction of previsit PROMs and direct integration of PROMs into the electronic health record.

Discussion: From an MS provider's perspective, PROMs offer useful information but barriers continue to exist. PROMs have promise as an adjunct tool in the care of PwMS to optimize their functioning and experiences as health care system users, and these results may inform future strategic implementation of routine PROMs in MS clinics.

Trial registration information: This trial was registered on July 28, 2021, at the NIH United States National Library of Medicine, ClinicalTrials.gov. Clinical Trial ID: NCT04979546.

背景和目的:人们一直对使用患者报告的结果测量(PROMs)来捕获和系统地评估患者对其多发性硬化症(MS)经历的看法并将这些信息反馈给临床医生感兴趣,但PROMs并没有在MS门诊诊所常规使用。我们探讨的观点,提供者照顾的人与MS (PwMS)的整合到临床实践的PROMs。方法:这是一项单独的随机对照试验(ClinicalTrials.gov: NCT0497954)的定性亚研究,该试验旨在检查PROM使用对PwMS患者抑郁和焦虑水平的影响。我们对10位参与研究的医疗服务提供者进行了半结构化访谈,并探讨了他们使用PROMs和PwMS的经验。主题分析通过混合归纳和演绎的方法进行使用逐字采访转录。结果:对7名神经科医师、2名MS专科执业护士和1名MS注册护士进行了访谈。提供者表达了几个促进PROM使用的因素,包括参与患者特定症状,启动患者目标设定,提高就诊效率和患者满意度。然而,供应商也表达了障碍,如临床工作流程中断和技术障碍,对结果有效性的怀疑,以及从prom获得的信息的道德/伦理义务。未来的机会是引入预诊prom和将prom直接集成到电子健康记录中。讨论:从MS提供商的角度来看,prom提供了有用的信息,但障碍仍然存在。PROMs有望成为护理PwMS的辅助工具,以优化其作为卫生保健系统用户的功能和体验,这些结果可能为MS诊所未来常规PROMs的战略实施提供信息。试验注册信息:该试验于2021年7月28日在美国国立卫生研究院美国国家医学图书馆ClinicalTrials.gov注册。临床试验编号:NCT04979546。
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引用次数: 0
Use of an Electronic Medical Record Alert to Prevent Iatrogenic Interventions in Patients With Psychogenic Nonepileptic Seizures. 使用电子病历警报预防因心因性非癫痫发作患者的医源性干预。
IF 2.3 Q3 CLINICAL NEUROLOGY Pub Date : 2025-06-01 Epub Date: 2025-04-07 DOI: 10.1212/CPJ.0000000000200457
Serena Yin, Lydia Wolkiewicz, Bichun Ouyang, Adriana Bermeo-Ovalle

Background and objectives: Seizures are a common presentation to the emergency department and the hospital setting. Psychogenic or functional seizures are often misdiagnosed as epileptic seizures or status epilepticus, and patients are subject to aggressive interventions including sedation, intubations, and prolonged hospital admissions. An electronic medical record (EMR) best practice alert (BPA) was implemented in 2016 for all patients with a confirmed diagnosis of psychogenic nonepileptic seizures (PNES) at Rush University Medical Center. It informs health care providers of the diagnosis and provides education on interacting with the patient's chart. This study evaluates the effectiveness of an EMR BPA in preventing iatrogenic interventions for patients with a diagnosis of PNES.

Methods: A retrospective chart review was performed on all patients who presented to Rush University Medical Center between January 2017 and December 2019 and had a PNES BPA triggered. Data on emergency department (ED) visits and inpatient admissions for these patients from the year before and the year after the first BPA trigger were compared. A Wilcoxon signed-rank test and McNemar test were used for analysis.

Results: A PNES BPA was triggered in 178 patients. One hundred and forty-three (80%) were female. The mean age was 41 (18-81) years. There was a decrease in the number of ED visits; hospital admissions; intensive care unit (ICU) admissions; and interventions such as intubations and rescue benzodiazepine use in the year after the BPA was first triggered compared with the previous year (p < 0.05). No adverse events were identified in relation to the BPA.

Discussion: This study demonstrates that the use of an EMR BPA can be safe and effective in preventing potential iatrogenic interventions and reducing acute health care utilization in patients with PNES. These BPAs can also be used as an educational tool to communicate the presentation, risks, and needs of these patients within the hospital setting.

背景和目的:癫痫发作是急诊科和医院的常见表现。心因性或功能性癫痫发作常被误诊为癫痫发作或癫痫持续状态,患者需接受积极干预,包括镇静、插管和延长住院时间。2016年,拉什大学医学中心对所有确诊为心因性非癫痫性发作(PNES)的患者实施了电子病历(EMR)最佳实践警报(BPA)。它告知医疗保健提供者诊断,并提供与患者图表互动的教育。本研究评估EMR双酚a对诊断为PNES的患者预防医源性干预的有效性。方法:对2017年1月至2019年12月期间在拉什大学医学中心就诊并触发PNES BPA的所有患者进行回顾性图表回顾。研究人员比较了这些患者首次双酚a诱发前后一年的急诊就诊和住院数据。采用Wilcoxon符号秩检验和McNemar检验进行分析。结果:178例患者触发PNES双酚A。143例(80%)为女性。平均年龄41岁(18-81岁)。急诊科就诊次数有所减少;住院;重症监护病房(ICU)入院;双酚a首次触发后一年插管和抢救苯二氮卓类药物使用等干预措施与前一年比较(p < 0.05)。没有发现与BPA有关的不良事件。讨论:本研究表明,使用EMR双酚a可以安全有效地预防潜在的医源性干预,并减少PNES患者的急性医疗保健使用率。这些双酚a也可以作为一种教育工具,在医院环境中沟通这些患者的表现、风险和需求。
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引用次数: 0
Grounded in Evidence. 以证据为基础。
IF 2.3 Q3 CLINICAL NEUROLOGY Pub Date : 2025-06-01 Epub Date: 2025-03-27 DOI: 10.1212/CPJ.0000000000200470
Lyell K Jones
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引用次数: 0
Prevention of Cerebrovascular Emergencies in Spaceflight: A Review and a Proposal for Enhanced Medical Screening Guidelines. 太空飞行中脑血管突发事件的预防:加强医疗筛查指南的综述和建议。
IF 2.3 Q3 CLINICAL NEUROLOGY Pub Date : 2025-06-01 Epub Date: 2025-03-27 DOI: 10.1212/CPJ.0000000000200445
Mark J Rosenberg, Brian F Saway, William J Tarver, James H Pavela, Jacob Hall, Sami Al Kasab, Guilherme Porto, Donna R Roberts

Purpose of review: A growing number of opportunities for paying customers to travel to space are becoming available. Preflight medical screening of these potential private astronauts will likely be performed by local physicians, with referral to specialists in aerospace medicine as required for more in-depth evaluation before flight qualification. Neurologic concerns contribute a portion of the potential medical risks for these private astronauts, especially with the participation of more diversified crews than traditional governmental astronauts. The objective of this article was to review the current knowledge base concerning cerebrovascular adaptation to spaceflight to inform risk factor assessment for flight-associated cerebrovascular emergencies by the neurologic community when performing initial medical screening of potential private astronauts.

Recent findings: A review of published human spaceflight studies and medical guidelines regarding cerebrovascular risks for spaceflight was conducted. Most of the available literature describes cohorts of a small number of astronauts undergoing spaceflight missions of various flight profiles. While there are gaps in the literature, cerebrovascular adaptation to spaceflight occurs, which may alter the medical risk profile in susceptible individuals. The occurrence of an inflight cerebrovascular emergency could have devastating consequences; therefore, additional screening tests may be required, based on risk level and mission profile, in assessing the more diverse commercial spaceflight population expected over the next decade.

Summary: With increasing interest in commercial space tourism among diverse participant populations, the stroke risk in microgravity/reduced gravity environments is unknown. Furthermore, stresses of rocket ascent/descent, abnormal fluid dynamics in microgravity, altered atmospheric conditions, and other unknown occupational hazards add additional complexity. Because inflight emergency management protocols have yet to be developed, the most effective tool to ensure spaceflight participant safety is comprehensive preflight preventative screenings. Determining neurologic risk factors is critical for developing evidence-based guidelines for preventative measures and treatment protocols in the future.

审查目的:付费客户前往太空旅行的机会越来越多。这些潜在的私人宇航员的飞行前医疗检查可能将由当地医生进行,必要时转诊给航空航天医学专家,以便在获得飞行资格前进行更深入的评估。神经方面的问题是这些私人宇航员潜在医疗风险的一部分,尤其是与传统的政府宇航员相比,这些宇航员的机组人员更加多样化。本文的目的是回顾目前有关脑血管适应太空飞行的知识基础,为神经病学界在对潜在的私人宇航员进行初步医疗筛查时评估飞行相关脑血管紧急情况的风险因素提供参考:我们对已发表的载人航天研究和有关航天脑血管风险的医学指南进行了回顾。大多数现有文献都描述了少数宇航员在执行不同飞行任务时的情况。虽然文献中存在空白,但脑血管对太空飞行的适应性是存在的,这可能会改变易感人群的医疗风险状况。发生飞行中的脑血管紧急情况可能会造成灾难性后果;因此,在评估预计未来十年将出现的更加多样化的商业太空飞行人群时,可能需要根据风险水平和飞行任务概况进行额外的筛查测试。摘要:随着不同参与人群对商业太空旅游的兴趣与日俱增,微重力/减重环境下的中风风险尚不清楚。此外,火箭上升/下降的压力、微重力状态下的异常流体动力学、改变的大气条件以及其他未知的职业危害也增加了复杂性。由于机上应急管理规程尚未制定,确保航天飞行参与者安全的最有效工具是全面的飞行前预防性筛查。确定神经系统风险因素对于未来制定以证据为基础的预防措施和治疗方案指南至关重要。
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引用次数: 0
Implementation of 2HELPS2B Seizure Risk Score: A Cost-Effective Approach to Seizure Detection in the Intensive Care Units. 实施2HELPS2B癫痫发作风险评分:一种在重症监护病房进行癫痫发作检测的成本效益方法。
IF 2.3 Q3 CLINICAL NEUROLOGY Pub Date : 2025-06-01 Epub Date: 2025-03-31 DOI: 10.1212/CPJ.0000000000200464
Fazila Aseem, Emily Fink, Chuning Liu, John Whalen, Jessica Werdel, Parin Nanavati, Fei Zou, Angela Wabulya, Casey Olm-Shipman, Suzette Maria LaRoche, Clio Rubinos

Background and objectives: Continuous EEG (cEEG) has become a standard for monitoring critically ill patients, but it is resource-intensive with limited availability. The 2HELP2B seizure risk score can help stratify seizure risk and aid in clinical decision making to optimize duration of monitoring. This study aimed to incorporate the 2HELPS2B score to inform cEEG duration and provide cost-effective care without compromising seizure detection.

Methods: We conducted a quality improvement study that targeted clinical workflow and seizure risk stratification in the intensive care units of a tertiary academic hospital. The study included adult patients who underwent cEEG between June 2020 and December 2022 (n = 552), after excluding patients undergoing cEEG for management of status epilepticus, spell characterization, intracranial pressure monitoring, and post-cardiac arrest (n = 129). We performed a retrospective chart review to establish baseline cEEG volume, seizure incidence, and monitoring duration. We then introduced the 2HELPS2B risk score through multidisciplinary education and used published recommendations to suggest optimal cEEG duration. After the intervention, we analyzed the impact of integrating the 2HELPS2B score on cEEG duration and seizure detection rates.

Results: Of 552 patients, most were low risk (n = 311, 56.3%), followed by moderate risk (n = 189, 34.2%) and high risk (n = 52, 9.4%). Before the intervention, cEEG duration was similar for all risk groups. After implementation of the 2HELPSB score, there was a significant reduction in cEEG duration for low-risk and moderate-risk patients (low 36.3 vs 23.8 hours; p < 0.0001, moderate 36.5 vs 29.3 hours; p = 0.01) and no significant change for the high-risk group (41.3 vs 40.4 hours; p = 0.92). Seizure detection was low except for the high-risk group (1.3% vs 7.9% vs 39.1%). Reduction in cEEG duration after implementation of the 2HELPS2B score did not lead to a significant change in seizure detection (0.6% vs 9% vs 37.9%).

Discussion: Most critically ill patients had low or moderate seizure risk and, accordingly, a low incidence of seizures detected during cEEG. Implementing the 2HELPS2B seizure risk score allowed customization of cEEG duration for individual patients, applying the practice of precision medicine. This approach successfully improved cEEG utilization without compromising seizure detection. In conclusion, implementing seizure risk stratification can provide cost-effective monitoring and improve cEEG access.

背景和目的:连续脑电图(cEEG)已成为监测危重病人的标准,但它需要大量资源,可用性有限。2HELP2B 癫痫发作风险评分可帮助对癫痫发作风险进行分层,并有助于临床决策以优化监测持续时间。本研究旨在纳入 2HELPS2B 评分,为 cEEG 持续时间提供依据,并在不影响癫痫发作检测的情况下提供具有成本效益的护理:我们开展了一项质量改进研究,针对一家三级学术医院重症监护室的临床工作流程和癫痫发作风险分层。研究纳入了 2020 年 6 月至 2022 年 12 月期间接受 cEEG 检查的成年患者(n = 552),但排除了因癫痫状态管理、咒语特征描述、颅内压监测和心脏骤停后接受 cEEG 检查的患者(n = 129)。我们进行了回顾性病历审查,以确定 cEEG 的基线量、癫痫发作率和监测持续时间。然后,我们通过多学科教育引入了 2HELPS2B 风险评分,并利用已发表的建议提出了最佳 cEEG 持续时间。干预后,我们分析了整合 2HELPS2B 评分对 cEEG 持续时间和癫痫发作检出率的影响:在 552 名患者中,大多数属于低风险(n = 311,56.3%),其次是中度风险(n = 189,34.2%)和高度风险(n = 52,9.4%)。干预前,所有风险组的 cEEG 持续时间相似。实施 2HELPSB 评分后,低风险和中度风险患者的 cEEG 持续时间显著缩短(低风险 36.3 小时 vs 23.8 小时;p < 0.0001,中度风险 36.5 小时 vs 29.3 小时;p = 0.01),而高风险组没有显著变化(41.3 小时 vs 40.4 小时;p = 0.92)。除高风险组外,癫痫发作检出率较低(1.3% vs 7.9% vs 39.1%)。在采用 2HELPS2B 评分后,缩短 cEEG 持续时间并未导致癫痫发作检出率发生显著变化(0.6% vs 9% vs 37.9%):讨论:大多数重症患者的癫痫发作风险为低度或中度,因此在 cEEG 中检测到的癫痫发作发生率较低。采用 2HELPS2B 癫痫发作风险评分后,可以根据患者的具体情况定制 cEEG 的持续时间,从而实现精准医疗。这种方法在不影响癫痫发作检测的前提下成功提高了 cEEG 的利用率。总之,实施癫痫发作风险分层可以提供具有成本效益的监测并提高 cEEG 的使用率。
{"title":"Implementation of 2HELPS2B Seizure Risk Score: A Cost-Effective Approach to Seizure Detection in the Intensive Care Units.","authors":"Fazila Aseem, Emily Fink, Chuning Liu, John Whalen, Jessica Werdel, Parin Nanavati, Fei Zou, Angela Wabulya, Casey Olm-Shipman, Suzette Maria LaRoche, Clio Rubinos","doi":"10.1212/CPJ.0000000000200464","DOIUrl":"10.1212/CPJ.0000000000200464","url":null,"abstract":"<p><strong>Background and objectives: </strong>Continuous EEG (cEEG) has become a standard for monitoring critically ill patients, but it is resource-intensive with limited availability. The 2HELP2B seizure risk score can help stratify seizure risk and aid in clinical decision making to optimize duration of monitoring. This study aimed to incorporate the 2HELPS2B score to inform cEEG duration and provide cost-effective care without compromising seizure detection.</p><p><strong>Methods: </strong>We conducted a quality improvement study that targeted clinical workflow and seizure risk stratification in the intensive care units of a tertiary academic hospital. The study included adult patients who underwent cEEG between June 2020 and December 2022 (n = 552), after excluding patients undergoing cEEG for management of status epilepticus, spell characterization, intracranial pressure monitoring, and post-cardiac arrest (n = 129). We performed a retrospective chart review to establish baseline cEEG volume, seizure incidence, and monitoring duration. We then introduced the 2HELPS2B risk score through multidisciplinary education and used published recommendations to suggest optimal cEEG duration. After the intervention, we analyzed the impact of integrating the 2HELPS2B score on cEEG duration and seizure detection rates.</p><p><strong>Results: </strong>Of 552 patients, most were low risk (n = 311, 56.3%), followed by moderate risk (n = 189, 34.2%) and high risk (n = 52, 9.4%). Before the intervention, cEEG duration was similar for all risk groups. After implementation of the 2HELPSB score, there was a significant reduction in cEEG duration for low-risk and moderate-risk patients (low 36.3 vs 23.8 hours; <i>p</i> < 0.0001, moderate 36.5 vs 29.3 hours; <i>p</i> = 0.01) and no significant change for the high-risk group (41.3 vs 40.4 hours; <i>p</i> = 0.92). Seizure detection was low except for the high-risk group (1.3% vs 7.9% vs 39.1%). Reduction in cEEG duration after implementation of the 2HELPS2B score did not lead to a significant change in seizure detection (0.6% vs 9% vs 37.9%).</p><p><strong>Discussion: </strong>Most critically ill patients had low or moderate seizure risk and, accordingly, a low incidence of seizures detected during cEEG. Implementing the 2HELPS2B seizure risk score allowed customization of cEEG duration for individual patients, applying the practice of precision medicine. This approach successfully improved cEEG utilization without compromising seizure detection. In conclusion, implementing seizure risk stratification can provide cost-effective monitoring and improve cEEG access.</p>","PeriodicalId":19136,"journal":{"name":"Neurology. Clinical practice","volume":"15 3","pages":"e200464"},"PeriodicalIF":2.3,"publicationDate":"2025-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11962049/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143780657","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}
引用次数: 0
Predictors of Health Care Utilization for Individuals With Manifest Huntington Disease. 显性亨廷顿病患者医疗保健利用的预测因素
IF 2.3 Q3 CLINICAL NEUROLOGY Pub Date : 2025-06-01 Epub Date: 2025-04-09 DOI: 10.1212/CPJ.0000000000200471
Amy C Ogilvie, Ryan M Carnahan, Adys Mendizabal, Stephanie Gilbertson-White, Aaron T Seaman, Elizabeth A Chrischilles, Jordan L Schultz

Background and objectives: There is a need to understand how different factors influence health care utilization for patients with Huntington disease (HD) to maximize benefits of primary and specialty care while minimizing need for costly emergency visits or hospitalizations. The primary objective of this study was to characterize how settings where patients with HD in Northern America receive care change throughout the disease course and determine whether the likelihood of different types of service utilization is influenced by clinical, sociodemographic, and caregiver characteristics.

Methods: Data from the Enroll-HD study and joinpoint regression were used to assess trends in neurology visits, general practitioner visits, emergency department visits, and inpatient stays over the disease course and as a function of total functional capacity. Generalized estimating equation models were then used to identify factors associated with use of these different services in the 6 months before their study visit.

Results: Visits from 1,631 participants in the Northern America region from the Enroll-HD study were included in this study. Trends in neurology, emergency, and inpatient visits remained constant over most of the disease duration. For the general practitioner visits, there was an increasing trend in use throughout the course of disease. Clinical factors, such as psychiatric symptoms, functional ability, and comorbidities, were associated with use of multiple types of health care services. Sociodemographic and caregiver factors, such as race or ethnicity, urban or rural residence, and caregiver employment status, were also associated with use of multiple health care services.

Discussion: Clinical, sociodemographic, and caregiver-related factors were all associated with outpatient, emergent, and inpatient care. This work identifies multiple avenues for future research on how to improve access to and quality of care for patients with HD, specifically relating to reducing the need for emergency visits and inpatient stays and promoting collaboration among primary and specialty clinicians.

背景和目的:有必要了解不同因素如何影响亨廷顿病(HD)患者的医疗保健利用,以最大限度地提高初级和专科护理的效益,同时最大限度地减少昂贵的急诊或住院需求。本研究的主要目的是描述北美HD患者在整个病程中接受护理的环境变化,并确定不同类型服务利用的可能性是否受到临床、社会人口统计学和护理人员特征的影响。方法:使用来自Enroll-HD研究和关节点回归的数据来评估神经内科就诊、全科医生就诊、急诊科就诊和住院时间的趋势,并将其作为总功能容量的函数。然后使用广义估计方程模型来确定与他们在研究访问前6个月内使用这些不同服务相关的因素。结果:来自北美地区的1,631名来自Enroll-HD研究的参与者被纳入本研究。在疾病持续的大部分时间里,神经病学、急诊和住院病人的就诊趋势保持不变。对于全科医生的访问,在整个疾病过程中使用有增加的趋势。临床因素,如精神症状、功能能力和合并症,与使用多种类型的卫生保健服务有关。社会人口和照顾者因素,如种族或民族、城市或农村居住地以及照顾者的就业状况,也与使用多种保健服务有关。讨论:临床、社会人口学和护理相关因素都与门诊、急诊和住院护理相关。这项工作确定了未来研究如何改善HD患者的可及性和护理质量的多种途径,特别是与减少急诊和住院的需求以及促进初级和专科临床医生之间的合作有关。
{"title":"Predictors of Health Care Utilization for Individuals With Manifest Huntington Disease.","authors":"Amy C Ogilvie, Ryan M Carnahan, Adys Mendizabal, Stephanie Gilbertson-White, Aaron T Seaman, Elizabeth A Chrischilles, Jordan L Schultz","doi":"10.1212/CPJ.0000000000200471","DOIUrl":"10.1212/CPJ.0000000000200471","url":null,"abstract":"<p><strong>Background and objectives: </strong>There is a need to understand how different factors influence health care utilization for patients with Huntington disease (HD) to maximize benefits of primary and specialty care while minimizing need for costly emergency visits or hospitalizations. The primary objective of this study was to characterize how settings where patients with HD in Northern America receive care change throughout the disease course and determine whether the likelihood of different types of service utilization is influenced by clinical, sociodemographic, and caregiver characteristics.</p><p><strong>Methods: </strong>Data from the Enroll-HD study and joinpoint regression were used to assess trends in neurology visits, general practitioner visits, emergency department visits, and inpatient stays over the disease course and as a function of total functional capacity. Generalized estimating equation models were then used to identify factors associated with use of these different services in the 6 months before their study visit.</p><p><strong>Results: </strong>Visits from 1,631 participants in the Northern America region from the Enroll-HD study were included in this study. Trends in neurology, emergency, and inpatient visits remained constant over most of the disease duration. For the general practitioner visits, there was an increasing trend in use throughout the course of disease. Clinical factors, such as psychiatric symptoms, functional ability, and comorbidities, were associated with use of multiple types of health care services. Sociodemographic and caregiver factors, such as race or ethnicity, urban or rural residence, and caregiver employment status, were also associated with use of multiple health care services.</p><p><strong>Discussion: </strong>Clinical, sociodemographic, and caregiver-related factors were all associated with outpatient, emergent, and inpatient care. This work identifies multiple avenues for future research on how to improve access to and quality of care for patients with HD, specifically relating to reducing the need for emergency visits and inpatient stays and promoting collaboration among primary and specialty clinicians.</p>","PeriodicalId":19136,"journal":{"name":"Neurology. Clinical practice","volume":"15 3","pages":"e200471"},"PeriodicalIF":2.3,"publicationDate":"2025-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12021023/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144025511","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}
引用次数: 0
To Take or Not to Take Antiseizure Medications: Patient-Centered Decision-Making About Discontinuation After Seizure Freedom. 服用或不服用抗癫痫药物:癫痫发作自由后以患者为中心的停药决策。
IF 2.3 Q3 CLINICAL NEUROLOGY Pub Date : 2025-06-01 Epub Date: 2025-05-02 DOI: 10.1212/CPJ.0000000000200482
Wesley T Kerr, Katherine N McFarlane
{"title":"To Take or Not to Take Antiseizure Medications: Patient-Centered Decision-Making About Discontinuation After Seizure Freedom.","authors":"Wesley T Kerr, Katherine N McFarlane","doi":"10.1212/CPJ.0000000000200482","DOIUrl":"10.1212/CPJ.0000000000200482","url":null,"abstract":"","PeriodicalId":19136,"journal":{"name":"Neurology. Clinical practice","volume":"15 3","pages":"e200482"},"PeriodicalIF":2.3,"publicationDate":"2025-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12054742/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144020356","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}
引用次数: 0
Suicidal Ideation and Sleep Disturbances Among People With Huntington Disease: Evidence From the HDBOI Study. 亨廷顿病患者的自杀倾向和睡眠障碍:来自 HDBOI 研究的证据
IF 2.3 Q3 CLINICAL NEUROLOGY Pub Date : 2025-06-01 Epub Date: 2025-03-31 DOI: 10.1212/CPJ.0000000000200461
Idaira Rodríguez Santana, Samuel A Frank, Tiago A Mestre, Astri Arnesen, Jamie L Hamilton, Hayley Hubberstey, Michaela Winkelmann, Elena Hernandez-Jimenez, Jeff Frimpter, Ricardo Dolmetsch, Talaha M Ali

Background and objectives: Suicidal ideation and sleep disturbances are more common among people with Huntington disease (PwHD) than otherwise healthy peers; however, the scope and magnitude of these challenges are not well understood. This study evaluated suicidal thoughts and sleep disturbances among PwHD in Europe and the United States using data from the Huntington's Disease Burden of Illness (HDBOI) study.

Methods: The HDBOI study is a cross-sectional burden-of-illness study of PwHD in France, Germany, Italy, Spain, the United Kingdom, and the United States. Eligible participants were adults (18 years and older) with motor manifest Huntington disease (HD) ≥ 12 months before study recruitment. PwHD were categorized as having early-stage (ES), mid-stage (MS), or advanced-stage (AS) HD as reported by the treating physician. Data were collected by the physician, and a voluntary questionnaire was completed by the PwHD or a caregiver. All findings were analyzed descriptively. Differences were assessed using analysis of variance or χ2 tests.

Results: A total of 2,094 PwHD were included; 1,602 (77%) were from Europe and 492 (23%) were from the United States, with 846 (40%) with ES, 701 (33%) with MS, and 547 (26%) with AS HD. PwHD reported current (13%, n = 272) or previous (28%, n = 575) suicidal ideation, which was more common with advanced HD (ES, 11%; MS, 14%; AS, 15%; p < 0.05). Of 482 questionnaire respondents, 91% (n = 437) reported difficulty sleeping, which was more common with AS HD (p < 0.05; [p = 0.000]).

Discussion: The HDBOI study showed a substantial burden of suicidal ideation and sleep disturbances among PwHD, which tended to worsen with disease severity.

背景和目的:自杀意念和睡眠障碍在亨廷顿病(PwHD)患者中比其他健康同龄人更常见;然而,这些挑战的范围和程度并没有得到很好的理解。本研究利用亨廷顿病疾病负担(HDBOI)研究的数据,评估了欧洲和美国PwHD患者的自杀念头和睡眠障碍。方法:HDBOI研究是一项在法国、德国、意大利、西班牙、英国和美国进行的PwHD的疾病负担横断面研究。符合条件的参与者是在研究招募前≥12个月患有运动显性亨廷顿病(HD)的成年人(18岁及以上)。根据治疗医师的报告,PwHD分为早期(ES)、中期(MS)或晚期(as) HD。数据由医生收集,并由PwHD或护理人员填写自愿问卷。对所有结果进行描述性分析。采用方差分析或χ2检验评估差异。结果:共纳入PwHD 2,094例;1602例(77%)来自欧洲,492例(23%)来自美国,其中ES 846例(40%),MS 701例(33%),AS HD 547例(26%)。PwHD患者报告当前(13%,n = 272)或既往(28%,n = 575)有自杀意念,晚期HD患者更常见(ES, 11%;女士,14%;, 15%;P < 0.05)。在482名受访者中,91% (n = 437)报告睡眠困难,这在AS - HD患者中更为常见(p < 0.05;[p = 0.000])。讨论:HDBOI研究显示,PwHD患者存在自杀意念和睡眠障碍的沉重负担,且随着疾病严重程度的加重,这些负担趋于恶化。
{"title":"Suicidal Ideation and Sleep Disturbances Among People With Huntington Disease: Evidence From the HDBOI Study.","authors":"Idaira Rodríguez Santana, Samuel A Frank, Tiago A Mestre, Astri Arnesen, Jamie L Hamilton, Hayley Hubberstey, Michaela Winkelmann, Elena Hernandez-Jimenez, Jeff Frimpter, Ricardo Dolmetsch, Talaha M Ali","doi":"10.1212/CPJ.0000000000200461","DOIUrl":"10.1212/CPJ.0000000000200461","url":null,"abstract":"<p><strong>Background and objectives: </strong>Suicidal ideation and sleep disturbances are more common among people with Huntington disease (PwHD) than otherwise healthy peers; however, the scope and magnitude of these challenges are not well understood. This study evaluated suicidal thoughts and sleep disturbances among PwHD in Europe and the United States using data from the Huntington's Disease Burden of Illness (HDBOI) study.</p><p><strong>Methods: </strong>The HDBOI study is a cross-sectional burden-of-illness study of PwHD in France, Germany, Italy, Spain, the United Kingdom, and the United States. Eligible participants were adults (18 years and older) with motor manifest Huntington disease (HD) ≥ 12 months before study recruitment. PwHD were categorized as having early-stage (ES), mid-stage (MS), or advanced-stage (AS) HD as reported by the treating physician. Data were collected by the physician, and a voluntary questionnaire was completed by the PwHD or a caregiver. All findings were analyzed descriptively. Differences were assessed using analysis of variance or χ<sup>2</sup> tests.</p><p><strong>Results: </strong>A total of 2,094 PwHD were included; 1,602 (77%) were from Europe and 492 (23%) were from the United States, with 846 (40%) with ES, 701 (33%) with MS, and 547 (26%) with AS HD. PwHD reported current (13%, n = 272) or previous (28%, n = 575) suicidal ideation, which was more common with advanced HD (ES, 11%; MS, 14%; AS, 15%; <i>p</i> < 0.05). Of 482 questionnaire respondents, 91% (n = 437) reported difficulty sleeping, which was more common with AS HD (<i>p</i> < 0.05; [<i>p</i> = 0.000]).</p><p><strong>Discussion: </strong>The HDBOI study showed a substantial burden of suicidal ideation and sleep disturbances among PwHD, which tended to worsen with disease severity.</p>","PeriodicalId":19136,"journal":{"name":"Neurology. Clinical practice","volume":"15 3","pages":"e200461"},"PeriodicalIF":2.3,"publicationDate":"2025-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11962051/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143772928","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}
引用次数: 0
Quality Improvement Initiative to Implement Anxiety Screening for Children and Teens With Headache and Epilepsy. 对患有头痛和癫痫的儿童和青少年实施焦虑筛查的质量改进倡议。
IF 2.3 Q3 CLINICAL NEUROLOGY Pub Date : 2025-06-01 Epub Date: 2025-03-28 DOI: 10.1212/CPJ.0000000000200458
Christina Murphy, Sara E Molisani, Amanda C Riisen, Carinna M Scotti-Degnan, Dina Karvounides, Stephanie Witzman, Michael C Kaufman, Alexander K Gonzalez, Mark Ramos, Christina L Szperka, Nicholas S Abend

Background and objectives: We conducted a quality improvement initiative to implement standardized screening for anxiety among adolescents with headache and/or epilepsy receiving outpatient neurology care at a quaternary health care system, consistent with recommendations from the American Academy of Neurology. Our SMART (Specific, Measurable, Achievable, Relevant, and Time-Based) aim was to screen ≥90% of established patients aged 12 years or older seen by a participating health care professional using a standardized anxiety screener by February 2024.

Methods: This initiative was conducted in patients seen for follow-up by 17 participating neurology health care professionals. Health care professional opinions were assessed before and after implementation of the Generalized Anxiety Disorder-7 (GAD-7), administered as a previsit questionnaire distributed using the electronic health record. The integrated workflow included a best practice advisory (BPA) alert that permitted easy access to interventions and automatic population of education materials into the after-visit summary. After 12 months of use (March 2023 to February 2024), we assessed demographic and diagnostic information, GAD-7 completion rates, anxiety symptom severity, BPA utilization, and health care professional acceptance of the intervention.

Results: The GAD-7 was completed for 64% of 3,671 encounters and by 71% of 2031 unique patients. The GAD-7 was more often completed for encounters if the patient was female, younger, or White or had a headache diagnosis. Among unique patients, anxiety symptoms were minimal in 50%, mild in 24%, moderate in 17%, and severe in 10%. Severe anxiety symptoms were more often present in female patients or those with a headache diagnosis. Among patients with severe anxiety symptoms, 66% had established behavioral health care plans and, for remaining patients, referrals were made to community behavioral health care professionals (11%), or pediatric psychologists (4%) or social workers (3%) within neurology. Clinicians indicated that the approach was easy to use and improved the quality of patient care.

Discussion: We implemented standardized EHR-based screening for anxiety symptoms for pediatric neurology patients, most of whom had headache or epilepsy. Screening was feasible, and approximately one-quarter of patients had moderate or severe anxiety symptoms. Future work will focus on improving completion rates of previsit questionnaires including the GAD-7 and optimizing clinician actions based on the screening data.

背景和目的:根据美国神经病学学会的建议,我们开展了一项质量改进计划,对在第四医疗保健系统接受门诊神经病学治疗的患有头痛和/或癫痫的青少年实施标准化的焦虑筛查。我们的SMART(特异性、可测量性、可实现性、相关性和基于时间的)目标是在2024年2月之前,使用标准化的焦虑筛查器筛查≥90%的由参与的医疗保健专业人员看到的12岁或以上的已确定患者。方法:这一举措是在17名参与神经保健专业人员随访的患者中进行的。在实施广泛性焦虑障碍-7 (GAD-7)之前和之后评估卫生保健专业人员的意见,并通过电子健康记录分发会前问卷。集成的工作流程包括一个最佳实践咨询(BPA)警报,可以方便地访问干预措施,并自动将教育材料添加到访问后摘要中。使用12个月后(2023年3月至2024年2月),我们评估了人口统计学和诊断信息、GAD-7完成率、焦虑症状严重程度、BPA使用率和卫生保健专业人员对干预的接受程度。结果:3671例患者中有64%完成了GAD-7, 2031例独特患者中有71%完成了GAD-7。如果患者是女性、年轻、白人或有头痛诊断,则更常完成GAD-7。在特殊患者中,50%的患者焦虑症状轻微,24%的患者焦虑症状轻微,17%的患者焦虑症状中度,10%的患者焦虑症状严重。严重的焦虑症状更常见于女性患者或诊断为头痛的患者。在有严重焦虑症状的患者中,66%制定了行为卫生保健计划,其余患者则转诊给社区行为卫生保健专业人员(11%)、儿科心理学家(4%)或神经病学领域的社会工作者(3%)。临床医生表示,该方法易于使用,提高了患者的护理质量。讨论:我们对大多数患有头痛或癫痫的儿童神经病学患者实施了标准化的基于电子病历的焦虑症状筛查。筛查是可行的,大约四分之一的患者有中度或重度焦虑症状。未来的工作将侧重于提高包括GAD-7在内的访前问卷的完成率,并根据筛查数据优化临床医生的行动。
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引用次数: 0
Malignancy Workup in Cryptogenic Stroke: A Survey of Canadian Stroke and Thrombosis Experts. 隐源性卒中的恶性肿瘤检查:加拿大卒中和血栓专家调查。
IF 2.3 Q3 CLINICAL NEUROLOGY Pub Date : 2025-06-01 Epub Date: 2025-04-29 DOI: 10.1212/CPJ.0000000000200477
Laurence Poirier, Deborah M Siegal, Dominick Bossé, Jamie Brehaut, Brian Dewar, Ronda Lun, Michel Christopher Frank Shamy, Dar Dowlatshahi

Background and objectives: The diagnostic workup for patients with cryptogenic stroke includes investigating for occult cancer, which is known to increase the risk of stroke. Current guidelines do not provide specific recommendations regarding the optimal approach for occult cancer screening after cryptogenic stroke. We surveyed Canadian stroke and thrombosis physicians to determine current workup preferences for detecting occult cancer after cryptogenic stroke.

Methods: We designed and distributed an anonymous online survey targeting physicians who manage patients with cryptogenic stroke through professional memberships of the Canadian Stroke Consortium and Thrombosis Canada. Using 4 clinical scenarios representative of patients with cryptogenic stroke with different ages (younger or older than 50 years) and from both sexes, we asked respondents which tests they routinely recommend when investigating for occult cancer among a list of laboratory investigations, imaging, and procedures. Results were analyzed using descriptive statistics.

Results: We received 138 responses to 5 survey questions. The most commonly recommended investigations were complete blood count (79%), creatinine (63%), and coagulation tests (56%), and the most frequently recommended imaging test was CT of the abdomen and pelvis (39%). A minority of respondents indicated they would order guideline-directed age-appropriate cancer screening. Approximately half of surveyed specialists deferred the workup of cancer to a primary care physician, and 12% did not suggest any cancer workup at all.

Discussion: This survey of stroke and thrombosis experts found heterogeneity in testing for cancer screening in patients with cryptogenic stroke, with the majority either not screening at all or deferring tests to primary care providers. Our survey highlights the need for better evidence and evidence-based recommendations to guide the approach to cancer screening in this population.

背景和目的:隐源性卒中患者的诊断检查包括调查隐匿性癌症,这是已知的增加卒中风险的因素。目前的指南没有提供关于隐源性卒中后隐匿性癌症筛查的最佳方法的具体建议。我们调查了加拿大的中风和血栓医生,以确定目前对隐源性中风后发现隐匿性癌症的检查偏好。方法:我们设计并分发了一项匿名在线调查,目标是通过加拿大卒中协会和加拿大血栓形成协会的专业会员管理隐源性卒中患者的医生。我们选取了4例不同年龄(小于或大于50岁)、男女隐性脑卒中患者的临床案例,询问受访者在调查隐匿性癌症时,在一系列实验室检查、影像学检查和手术中,他们通常推荐哪些检查。结果采用描述性统计进行分析。结果:我们收到了5个调查问题的138份回复。最常推荐的检查是全血细胞计数(79%)、肌酐(63%)和凝血检查(56%),最常推荐的影像学检查是腹部和骨盆的CT检查(39%)。少数受访者表示,他们将要求指南指导的适合年龄的癌症筛查。大约一半的被调查专家将癌症检查推迟到初级保健医生那里,12%的人根本不建议任何癌症检查。讨论:这项对卒中和血栓专家的调查发现,在隐源性卒中患者的癌症筛查测试中存在异质性,大多数患者要么根本不筛查,要么将测试推迟到初级保健提供者。我们的调查强调需要更好的证据和基于证据的建议来指导这一人群的癌症筛查方法。
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引用次数: 0
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Neurology. Clinical practice
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