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Novel Post-Neurointensive Care Recovery Clinic: Design, Utilization, and Clinician Perspectives. 新颖的神经重症监护后康复诊所:设计、使用和临床医生的观点。
IF 2.3 Q3 CLINICAL NEUROLOGY Pub Date : 2025-02-01 Epub Date: 2024-10-08 DOI: 10.1212/CPJ.0000000000200364
Julia M Carlson, Galina Gheihman, Kristi Emerson, Haitham S Alabsi, W Taylor Kimberly, Michael J Young, David J Lin

Background and objectives: Despite increasing interest in post-intensive care unit (ICU) clinical care and management, there have been limited descriptions focused on the post-neurologic (neuro)-ICU population. Here, we describe the design of a post-neuro-ICU Neurorecovery Clinic (NRC) and present data collected regarding the clinic's population, referrals, visits, and clinician satisfaction.

Methods: This is a single-institution experience with a NRC designed to provide an infrastructure for post-ICU care to patients recovering from acute neurologic disorders or systemic conditions with neurologic sequelae. The clinic offers 2 visit types with different frequencies: a weekly visit and a monthly multidisciplinary visit. This study assessed clinical utilization and clinician perspectives regarding the clinic. Data on clinic referrals, no-show frequency, visit types, and diagnoses for both weekly and monthly visits were collected. A survey was conducted to assess clinician satisfaction and perspectives. Qualitative thematic analysis was performed to identify major themes among survey free responses.

Results: In a 2-year period, 225 patients were referred from the Massachusetts General Hospital neuro-ICU to the NRC. Of those, 105 (47%) were seen in clinic for at least one visit. The most common reasons for loss to follow-up were no shows (38%) and noncontracted insurance (21%). Twenty percent of visits were in-person (the rest were by telehealth). Forty-eight percent were new patients compared with return visits. The most common diagnoses were other (36%), ischemic stroke (26%), and traumatic brain injury (17%). An additional monthly multidisciplinary clinic has seen 14 patients with one no show. Clinicians found their experience in the NRC valuable. Identified benefits included interdisciplinary collaboration, being a more well-rounded and better clinician, improving effectiveness in managing post-ICU problems, and influencing ICU prognosis. Clinicians' greatest challenge was navigating resource limitations for patients.

Discussion: A postneuro-ICU NRC is a feasible model of care delivery for patients after severe acute neurologic disorders. Patients with a broad variety of diagnoses were seen in a 2-year period. Providers valued their clinic time and experiences. Future studies should evaluate whether this model of care improves patients' postneuro-ICU outcomes.

背景和目的:尽管人们对重症监护室(ICU)后的临床护理和管理越来越感兴趣,但对神经重症监护室(ICU)后人群的描述却很有限。在此,我们介绍了神经重症监护室(ICU)术后神经康复诊所(NRC)的设计,并展示了收集到的有关诊所服务人群、转诊、就诊和临床医生满意度的数据:这是一个单一机构的神经康复诊所,旨在为急性神经系统疾病或伴有神经系统后遗症的全身性疾病的康复患者提供 ICU 后护理的基础设施。诊所提供两种不同频率的就诊类型:每周一次就诊和每月一次多学科就诊。本研究评估了诊所的临床利用率和临床医生对诊所的看法。研究收集了每周出诊和每月出诊的转诊情况、未出诊频率、出诊类型和诊断数据。还进行了一项调查,以评估临床医生的满意度和观点。进行了定性主题分析,以确定调查自由回答中的主要主题:在两年的时间里,共有 225 名患者从麻省总医院神经重症监护室转诊至 NRC。其中 105 人(47%)至少在诊所就诊过一次。失去随访机会的最常见原因是未露面(38%)和未签约保险(21%)。20% 的就诊是面对面的(其余为远程医疗)。与回访相比,有 48% 是新患者。最常见的诊断是其他(36%)、缺血性中风(26%)和脑外伤(17%)。此外,每月一次的多学科门诊共接诊了 14 名患者,其中一名患者没有前来就诊。临床医生认为他们在 NRC 的经历非常宝贵。他们所发现的益处包括:跨学科合作、成为更全面、更优秀的临床医生、提高处理重症监护室后问题的效率以及影响重症监护室的预后。临床医生面临的最大挑战是为患者解决资源限制问题:讨论:神经重症监护室后 NRC 是为严重急性神经系统疾病患者提供护理服务的可行模式。在两年的时间里,共接诊了各种诊断的患者。医护人员非常珍惜他们的门诊时间和经历。未来的研究应评估这种护理模式是否能改善神经重症监护室术后患者的预后。
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引用次数: 0
The New Frontier of Adult Neurodevelopmental Care: Individual and Caregiver Values. 成人神经发育护理的新领域:个人和护理者的价值观。
IF 2.3 Q3 CLINICAL NEUROLOGY Pub Date : 2025-02-01 Epub Date: 2024-10-08 DOI: 10.1212/CPJ.0000000000200384
Jessica S Sanders, Ashley Dafoe, Chloe Glaros, Brooke Dorsey Holliman

Background and objectives: There are few specialists that serve adults with neurodevelopmental disabilities (NDD), and most adults with NDD receive care from providers without specialty training in NDD. Care for this population is highly variable, and patient and caregiver priorities in this age group are not well known. We aimed to explore individual and caregiver values around adult neurodevelopmental care.

Methods: In this qualitative study, a qualitative analyst conducted 22 semistructured virtual interviews from September 2021 to February 2022 with randomly selected adults with NDD and/or their caregivers. Each individual with NDD had at least one appointment in the adult NDD clinic, which started in October 2020. Interviews were recorded and professionally transcribed. An inductive codebook was developed and reconciled through an iterative process; transcripts were coded in Atlas.ti with 20% double-coding. Major themes were developed through team discussion.

Results: Most interviewees were caregivers of patients with NDD (12); 9 interviews were with patient/caregiver dyads; 1 interview was with a patient alone. Three main themes emerged from the interviews. (1) Value in providers who are curious, engaged, and knowledgeable about NDD-related conditions, which individuals and caregivers referred to as "Unicorn Providers." (2) Value in a connected and coordinated web of care. (3) Value in comfortable and adaptable clinic spaces. They value clinical environments that foster patient success during visits.

Discussion: The need for adult neurodevelopmental care is growing as more individuals with NDD are living into adulthood. Better understanding of patient and caregiver values can help shape this emerging field to meet the needs of this unique, often overlooked and underserved, population.

背景与目标:为成人神经发育障碍(NDD)患者提供服务的专科医生很少,大多数成人神经发育障碍患者接受的医疗服务提供者都没有接受过 NDD 方面的专业培训。对这一人群的护理非常多变,而患者和护理者对这一年龄组的护理重点也不甚了解。我们的目标是探索围绕成人神经发育护理的个人和护理者价值观:在这项定性研究中,一名定性分析人员于 2021 年 9 月至 2022 年 2 月对随机挑选的成人神经发育障碍患者和/或其护理人员进行了 22 次半结构化虚拟访谈。每位 NDD 患者都至少在 2020 年 10 月开始的成人 NDD 诊所就诊过一次。对访谈进行了录音和专业转录。我们制定了归纳式编码手册,并通过迭代过程进行核对;在 Atlas.ti 中对记录誊本进行了编码,其中 20% 进行了双重编码。通过团队讨论确定了主要的主题:大多数受访者是 NDD 患者的护理者(12 人);9 个访谈对象是患者/护理者二人组;1 个访谈对象是单独的患者。访谈中出现了三大主题(1) 对 NDD 相关病症充满好奇、参与其中并了解相关知识的医疗服务提供者具有价值,个人和护理人员将其称为 "独角兽医疗服务提供者"。(2) 重视连接和协调的护理网络。(3) 重视舒适、适应性强的诊所空间。他们重视能促进患者成功就诊的临床环境:随着越来越多的 NDD 患者长大成人,对成人神经发育护理的需求也在不断增长。更好地了解患者和护理人员的价值观有助于塑造这一新兴领域,以满足这一往往被忽视和服务不足的独特人群的需求。
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引用次数: 0
How to Design and Write Your Quality Improvement Study for Publication: Pearls and Pitfalls. 如何设计和撰写供发表的质量改进研究报告:珍珠与陷阱
IF 2.3 Q3 CLINICAL NEUROLOGY Pub Date : 2025-02-01 Epub Date: 2024-12-11 DOI: 10.1212/CPJ.0000000000200419
Anup D Patel, Laurice Yang, Kathryn Kvam, Christine Baca, Lyell K Jones

Objective: To describe a pragmatic process for translating quality improvement (QI) projects into published manuscripts.

Scope: Types of QI work that are generalizable and have broad relevance (to journals and readers), design principles that are important for publishable QI work, how QI manuscript organization might differ from biomedical manuscripts, how to use and not to use Standards for Quality Improvement Reporting Excellence and other guidelines, pitfalls, and how to avoid/repair them.

目的: 描述将质量改进(QI)项目转化为发表手稿的实用流程:描述将质量改进(QI)项目转化为发表手稿的实用流程:具有普遍性和广泛相关性(对期刊和读者)的质量改进工作类型、对可发表的质量改进工作非常重要的设计原则、质量改进稿件的组织与生物医学稿件有何不同、如何使用和不使用《卓越质量改进报告标准》及其他指南、陷阱以及如何避免/弥补这些陷阱。
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引用次数: 0
Erratum: Cavum Septum Pellucidum in Former American Football Players: Findings From the DIAGNOSE CTE Research Project. 勘误:前美式足球运动员的透明隔膜:DIAGNOSE CTE 研究项目的发现。
IF 2.3 Q3 CLINICAL NEUROLOGY Pub Date : 2025-02-01 Epub Date: 2024-11-07 DOI: 10.1212/CPJ.0000000000200414

[This corrects the article DOI: 10.1212/CPJ.0000000000200324.].

[此处更正了文章 DOI:10.1212/CPJ.0000000000200324]。
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引用次数: 0
Referral to a Functional Seizures Clinic Reduces Inpatient and Emergency Department Health Care Utilization and Costs. 转诊至功能性癫痫发作诊所可减少住院病人和急诊科的医疗使用率和费用。
IF 2.3 Q3 CLINICAL NEUROLOGY Pub Date : 2025-02-01 Epub Date: 2024-11-21 DOI: 10.1212/CPJ.0000000000200393
Meagan R Bean, Meagan M Watson, Mackenzi L Moore, Laura A Strom

Background and objectives: People with functional seizures (FSs) experience high health care utilization and costs revolving around the emergency department (ED). Overall, appropriate treatment of FS is underused, and better care pathways are associated with lower ED reattendance. Our objective was to assess changes in total ED and inpatient visits and costs before and after referral to a specialized, comprehensive FS treatment clinic.

Methods: We collected data from 100 consecutive patients referred to the University of Colorado (CU) FS Clinic between July 2019 and December 2021. Hospital account data were obtained directly from the electronic health record. Total ED and inpatient visits, charges, and payments 1 year before and 1 year after referral were collected and analyzed using the Wilcoxon signed-rank test.

Results: Ninety-four patients were included for analysis. 79% were female, 52% were on Medicaid, and the mean age was 41 (SD 13) years. Total visits after referral (ED and inpatient) were significantly reduced compared with total visits before referral (mean = 1.44 (SD 3.52) vs 1.83 (SD 3.52), p = 0.045). The same test was performed for total charges after and before referral ($15,551 (SD $38,712) vs $30,257 (SD $81,589), p = 0.03) and for total payments after and before referral ($2,469 (SD $6,682) vs $5,199 (SD $15,084), p = 0.02).

Discussion: Referral to a specialized FS clinic is associated with reduced health care utilization and costs. This proof-of-concept study reveals that hospitals should implement policies to support efficient care pathways to comprehensive FS treatment programs with potential for cost savings.

背景和目的:功能性癫痫发作(FSs)患者在急诊科(ED)就诊的医疗费用和使用率都很高。总体而言,功能性癫痫的适当治疗未得到充分利用,而更好的治疗路径与较低的急诊科复诊率有关。我们的目标是评估转诊到FS综合治疗专科诊所前后,急诊室和住院总就诊人次及费用的变化情况:我们收集了 2019 年 7 月至 2021 年 12 月期间转诊至科罗拉多大学(CU)FS 诊所的 100 名连续患者的数据。医院账户数据直接来自电子健康记录。收集了转诊前 1 年和转诊后 1 年的急诊室和住院总人次、费用和支付情况,并使用 Wilcoxon 符号秩检验进行了分析:结果:共纳入 94 名患者进行分析。其中 79% 为女性,52% 接受医疗补助,平均年龄为 41 岁(标准差为 13 岁)。与转诊前相比,转诊后的总就诊次数(急诊室和住院)明显减少(平均 = 1.44 (SD 3.52) vs 1.83 (SD 3.52),P = 0.045)。转诊前后的总费用(15,551 美元(标清 38,712 美元) vs 30,257 美元(标清 81,589 美元),p = 0.03)和转诊前后的总支付费用(2,469 美元(标清 6,682 美元) vs 5,199 美元(标清 15,084 美元),p = 0.02)也进行了同样的检验:转诊到 FS 专科诊所与降低医疗使用率和费用有关。这项概念验证研究表明,医院应实施相关政策,支持通过有效的医疗途径转诊到具有节约成本潜力的FS综合治疗项目。
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引用次数: 0
Risk of Epilepsy Following a First Posttraumatic Seizure: A Register-Based Study. 首次创伤后癫痫发作的风险:一项基于登记的研究。
IF 2.3 Q3 CLINICAL NEUROLOGY Pub Date : 2025-02-01 Epub Date: 2024-11-21 DOI: 10.1212/CPJ.0000000000200409
Markus Karlander, Samuel Håkansson, Johan Ljungqvist, Ann Sörbo, Johan Zelano

Background and objectives: Traumatic brain injury (TBI) is a common cause of epilepsy, and the risk increases with injury severity. Whether a first posttraumatic seizure (PTS) represents epilepsy is a common clinical problem, but often unknown. Prognostication is important for providing correct patient information and consideration of antiseizure medication. Our objective was to understand how trauma severity and latency from the injury affect the risk of epilepsy after a first PTS.

Methods: The register-based cohort study including all individuals hospitalized following a TBI in Sweden 2000-2010, in addition to 3 age-matched and sex-matched controls per case. We analyzed the 10-year probability of epilepsy following a first seizure using the Kaplan-Meier estimator.

Results: The risk of an epilepsy diagnosis was 41.1% (95% CI 38.6-43.7) following a PTS, higher than the risk of 33.4% (95% CI 30.3-36.5) in those without prior TBI. The risk increased with injury severity, with the highest risk following focal cerebral injuries, 62.3% (95% CI 53.7-70.9). Mild injuries and skull fractures showed a similar risk to the group without previous TBI. In addition, the risk was higher if the seizure occurred <2 years following the trauma.

Discussion: Severity of the injury and latency are major modulators of epilepsy risk following a first PTS. The risk was high in the most severe types of TBI, but a substantial proportion did not develop epilepsy, highlighting the need for further research on prognostication and biomarkers, as well as caution in diagnosing epilepsy based on a first PTS.

背景和目的:创伤性脑损伤(TBI)是导致癫痫的常见原因,其风险随受伤严重程度而增加。首次创伤后癫痫发作(PTS)是否代表癫痫是一个常见的临床问题,但往往不为人所知。预诊对于提供正确的患者信息和考虑抗癫痫药物治疗非常重要。我们的目标是了解创伤严重程度和受伤后的潜伏期如何影响首次 PTS 后的癫痫风险:基于登记的队列研究包括 2000-2010 年瑞典所有因创伤性脑损伤住院的患者,以及每个病例 3 个年龄和性别匹配的对照组。我们使用 Kaplan-Meier 估计法分析了首次癫痫发作后 10 年的癫痫概率:结果:在创伤后应激障碍发生后,癫痫诊断风险为 41.1%(95% CI 38.6-43.7),高于无创伤后应激障碍患者的 33.4%(95% CI 30.3-36.5)。风险随受伤严重程度而增加,局灶性脑损伤的风险最高,为 62.3% (95% CI 53.7-70.9)。轻度损伤和颅骨骨折的风险与既往无创伤性脑损伤的人群相似。此外,如果癫痫发作发生在讨论期,则风险更高:损伤的严重程度和潜伏期是首次创伤后应激障碍后癫痫风险的主要调节因素。最严重类型的创伤性脑损伤的风险很高,但有相当一部分人并未发展为癫痫,这突出表明有必要进一步研究预后和生物标志物,以及在根据首次创伤后应激障碍诊断癫痫时要谨慎。
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引用次数: 0
Corticobasal Syndrome: Are There Central or Peripheral Triggers? 皮质基底综合征:是中枢诱因还是外周诱因?
IF 2.3 Q3 CLINICAL NEUROLOGY Pub Date : 2025-02-01 Epub Date: 2024-10-08 DOI: 10.1212/CPJ.0000000000200365
Abhishek Lenka, Joseph Jankovic

Background and objectives: Corticobasal syndrome (CBS) is a complex of symptoms and signs comprising limb rigidity, bradykinesia, dystonia, myoclonus, apraxia, cortical sensory loss, and a variety of cognitive and language impairments. CBS is commonly seen in tauopathies. Striking asymmetry in clinical and imaging findings in CBS raises questions about potential triggers initiating neurodegeneration. The objective of this study was to investigate potential central or peripheral triggers preceding CBS symptoms.

Methods: In this retrospective observational study, we reviewed medical records of patients with CBS at our Parkinson's Disease Center and Movement Disorders Clinic, focusing on evidence of possible central or peripheral "trigger" occurring within a year before the onset of CBS. We also reviewed records of patients with Parkinson disease (PD) for comparison.

Results: Of the 72 patients with CBS, 15 (20.8%) reported potential focal triggers before the onset of CBS-related neurologic symptoms. By contrast, only 1 of 72 patients with PD (1.4%) had a documented trigger before the onset of PD-related symptoms (p < 0.001). Of potential triggers, 13 were peripheral (related to hand or shoulder surgeries or trauma) and 2 were central (stroke and head trauma). Patients with CBS with triggers were younger, had earlier symptom onset, comprised a higher proportion of men, and had a higher likelihood of limb onset of symptoms than those without.

Discussion: Our finding of relatively high frequency of focal triggers in CBS compared with PD suggests potential central or peripheral triggers initiating neurodegeneration, possibly explaining asymmetric clinical and imaging features in CBS. Further research is necessary to validate and explore this observation's implications for CBS pathogenesis.

背景和目的:皮质基底综合征(CBS)是由肢体僵硬、运动迟缓、肌张力障碍、肌阵挛、失能、皮质感觉缺失以及各种认知和语言障碍组成的症状和体征综合征。CBS 常见于陶陶病。CBS 的临床和影像学发现具有显著的不对称性,这引发了人们对引发神经变性的潜在诱因的疑问。本研究的目的是调查 CBS 症状出现前的潜在中枢或外周诱因:在这项回顾性观察研究中,我们查阅了帕金森病中心和运动障碍门诊的 CBS 患者的医疗记录,重点关注 CBS 发病前一年内可能发生的中枢或外周 "诱发因素 "的证据。我们还查阅了帕金森病(PD)患者的病历,以进行对比:在 72 名 CBS 患者中,有 15 人(20.8%)在出现 CBS 相关神经症状之前报告了潜在的病灶触发因素。相比之下,72 名帕金森病患者中只有 1 人(1.4%)在出现帕金森病相关症状之前有记录的诱发因素(P < 0.001)。在潜在的触发因素中,13 个是外周触发因素(与手部或肩部手术或外伤有关),2 个是中枢触发因素(中风和头部外伤)。与无诱发因素的患者相比,有诱发因素的CBS患者更年轻、症状出现更早、男性比例更高、肢端发病的可能性更大:讨论:我们发现,与帕金森病相比,CBS中局灶性诱发因素的频率相对较高,这表明潜在的中枢或外周诱发因素可能会引发神经变性,从而解释了CBS不对称的临床和影像学特征。有必要开展进一步研究,以验证和探讨这一观察结果对 CBS 发病机制的影响。
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引用次数: 0
Dissemination of VMAT-2 Inhibitors: A New Class Drug for Tardive Dyskinesia and Huntington Disease. 传播 VMAT-2 抑制剂:治疗迟发性运动障碍和亨廷顿症的一类新药。
IF 2.3 Q3 CLINICAL NEUROLOGY Pub Date : 2025-02-01 Epub Date: 2024-10-08 DOI: 10.1212/CPJ.0000000000200392
Erica Ma, Emma Krening, Michiko K Bruno

Background and objectives: In 2017, the FDA approved deutetrabenazine (AUSTEDO) for the treatment of tardive dyskinesia (TD) and chorea associated with Huntington disease (HD). Concurrently, valbenazine (INGREZZA) was approved specifically for TD. The adoption of new medications is influenced by various factors, including patient's medical needs, the prescriber's adoption of new practice, and external environmental factors (e.g., cost). Our analysis aims to examine the dissemination of 2 vesicular monoamine transporter 2 (VMAT-2) inhibitors, deutetrabenazine and valbenazine, in the market.

Methods: In this cross-sectional study, we conducted a descriptive statistical analysis of the 2017-2020 prescription records for deutetrabenazine and valbenazine using the Centers for Medicare & Medicaid Services Medicare Provider Utilization and Payment Data: Part D Prescriber public use file. In addition, we linked this data set to the Open Payment database to analyze industry payments.

Results: We identified a total of 3,706 deutetrabenazine prescribers and 4,895 valbenazine prescribers. Prescription volume (standardized 30-day prescription) increased annually across different specialties for both VMAT-2 inhibitors from 2017 to 2020. Neurologists were the highest contributors to deutetrabenazine prescriptions (N = 50,017; 35.2%), and psychiatrists were the highest contributors to valbenazine prescriptions (N = 77,799; 42.3%). A total of 1,217 deutetrabenazine physician prescribers (47.5%) and 1,509 valbenazine physician prescribers (49.7%) received industry payments from TEVA Pharmaceuticals and Neurocrine Biosciences, respectively. Receipt of industry payments was associated with higher prescription volume for both deutetrabenazine (p < 0.001) and valbenazine (p < 0.001). Approximately three-quarters of the industry payments were used in nonconsulting services, with a median payment value per physician of $18,101 for deutetrabenazine and $25,920 for valbenazine.

Discussion: The findings illustrate a yearly increase in Medicare prescription volume for deutetrabenazine and valbenazine after FDA approval, with neurologists and psychiatrists as primary prescribers of deutetrabenazine and valbenazine, respectively. There was a statistical difference in the prescription volume between those who received industry payments and those who did not, suggesting that receipt of payments may be associated with prescription volume. Nonconsulting services constituted the largest sum of industry payments for both medications. Further research exploring the causative factors of new medication uptake is needed to better understand how medications disseminate across the market.

背景和目标:2017 年,FDA 批准了去甲替拉嗪(AUSTEDO)用于治疗与亨廷顿病(HD)相关的迟发性运动障碍(TD)和舞蹈症。与此同时,戊苯那嗪(INGREZZA)也被批准专门用于治疗迟发性运动障碍。新药的采用受多种因素的影响,包括患者的医疗需求、处方者对新疗法的采用以及外部环境因素(如成本)。我们的分析旨在研究两种囊泡单胺转运体 2(VMAT-2)抑制剂--去甲替拉嗪和戊苯嗪--在市场上的传播情况:在这项横断面研究中,我们利用美国医疗保险和医疗补助服务中心的医疗保险提供者使用和支付数据,对 2017-2020 年去甲替拉嗪和戊苯那嗪的处方记录进行了描述性统计分析:D 部分处方者公共使用文件。此外,我们还将该数据集与开放支付数据库相连接,以分析行业支付情况:我们共发现了 3706 名脱乙酰丙嗪处方者和 4895 名戊苯那嗪处方者。从 2017 年到 2020 年,这两种 VMAT-2 抑制剂在不同专科的处方量(30 天标准处方)逐年增加。神经科医生开出的去甲替拉嗪处方最多(N = 50,017; 35.2%),精神科医生开出的戊苯纳嗪处方最多(N = 77,799; 42.3%)。共有 1,217 名脱替拉嗪医生处方者(47.5%)和 1,509 名戊苯纳嗪医生处方者(49.7%)分别从 TEVA 制药公司和 Neurocrine 生物科学公司获得了行业付款。接受行业付款与较高的去甲替拉嗪(p < 0.001)和戊苯那嗪(p < 0.001)处方量有关。约四分之三的行业付款用于非咨询服务,每位医生的中位付款额为:去甲替拉嗪 18,101 美元,戊苯那嗪 25,920 美元:讨论:研究结果表明,在获得 FDA 批准后,医疗保险处方量逐年增加,主要处方者为神经科医生和精神科医生,处方量分别为去乙酰丙嗪和戊苯那嗪。获得行业付款和未获得行业付款的处方量存在统计学差异,这表明获得付款可能与处方量有关。在这两种药物的行业付款中,非咨询服务所占比例最大。要想更好地了解药物是如何在市场上传播的,还需要进一步研究新药使用的诱因。
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引用次数: 0
Prevalence of Neurologic Disease Among Those in Same-Sex Relationships: Evidence from the Medical Expenditure Panel Survey. 同性关系人群中神经系统疾病的患病率:来自医疗支出小组调查的证据。
IF 2.3 Q3 CLINICAL NEUROLOGY Pub Date : 2025-02-01 Epub Date: 2024-10-08 DOI: 10.1212/CPJ.0000000000200385
Lennox Byer, Elan L Guterman, Nicole Rosendale

Background and objectives: Prior research has shown several health disparities affecting sexual minority people. Research on the neurologic health of sexual minority people has been limited. Our objective was to characterize the prevalence of neurologic disease and utilization of a neurologist among a population of sexual minority people.

Methods: We conducted a cross-sectional analysis of sexual minority people, using people in same-sex relationships as a proxy for sexual minority status, from the Medical Expenditure Panel Survey (MEPS) from 2016 to 2020. The MEPS is a government-run survey that uses complex sampling to obtain a nationally representative sample. Our primary outcome was a diagnosis of any neurologic disease. We also completed stratified analyses by sex, race, and ethnicity. Our secondary outcome was visit to a neurologist within the past year. Logistic regression was used to compare the odds of both outcomes in those in same-sex relationships and those in different-sex relationships.

Results: Among 153,313 MEPS participants, there were 61,645 (40.2%) participants in relationships who were included in our sample. Of those, 822 (1.33%) participants were in same-sex relationships. Participants were, on average, aged 51 years (median 50 years, IQR 38-63); nearly 50% reported female sex and mostly non-Hispanic White (67.81%). Among those in same-sex relationships, 22.7% reported a neurologic diagnosis compared with 18.1% of those in different-sex relationships (OR 1.33; 95% CI 1.04-1.71). This difference was maintained with adjustment for age, sex, education, and insurance (OR 1.48; 95% CI 1.15-1.91). There was no significant difference in visit to a neurologist (adjusted OR 1.38; 95% CI 0.91-2.10).

Discussion: In this nationally representative sample, neurologic disease was more prevalent among those in same-sex relationships compared with those in different-sex relationships. Limited sample size and absent measurements of minority stress limited the etiologic search for factors driving this disparity. There was no significant difference in visit to a neurologist, and both groups reported their overall health as being similar. There is a need for more routine measurement of sexual orientation in neurologic research. This will allow us to detail differences in neurologic disease risk factors, prevalence, and outcomes. The end goal is the identification of opportunities for intervention and advancement of neurologic health equity.

背景和目标:先前的研究表明,性少数群体在健康方面存在一些差异。有关性少数群体神经系统健康的研究还很有限。我们的目的是了解性少数人群中神经系统疾病的患病率和神经科医生的使用情况:我们从 2016 年至 2020 年的医疗支出面板调查(MEPS)中对性少数人群进行了横截面分析,并将同性关系人群作为性少数人群的替代身份。MEPS是一项由政府管理的调查,采用复杂的抽样方法获得具有全国代表性的样本。我们的主要结果是任何神经系统疾病的诊断。我们还按性别、种族和民族进行了分层分析。我们的次要结果是在过去一年内就诊于神经科医生。我们使用逻辑回归法比较了同性关系者和异性关系者出现这两种结果的几率:在 153,313 名 MEPS 参与者中,有 61,645 名(40.2%)有恋爱关系的参与者被纳入样本。其中,822 人(1.33%)处于同性关系中。参与者的平均年龄为 51 岁(中位数为 50 岁,IQR 为 38-63);近 50%的参与者报告性别为女性,大部分为非西班牙裔白人(67.81%)。在同性关系中,22.7%的人报告了神经系统诊断,而在异性关系中,18.1%的人报告了神经系统诊断(OR 1.33; 95% CI 1.04-1.71)。在对年龄、性别、教育程度和保险进行调整后,这一差异依然存在(OR 1.48; 95% CI 1.15-1.91)。在看神经科医生方面没有明显差异(调整后 OR 为 1.38;95% CI 为 0.91-2.10):讨论:在这一具有全国代表性的样本中,神经系统疾病在同性关系者中的发病率高于异性关系者。有限的样本量和缺乏对少数群体压力的测量限制了对造成这种差异的因素的病因学研究。两组人在看神经科医生方面没有明显差异,他们报告的总体健康状况相似。在神经病学研究中,有必要对性取向进行更常规的测量。这将使我们能够详细了解神经系统疾病风险因素、发病率和结果的差异。最终目标是找到干预和促进神经系统健康公平的机会。
{"title":"Prevalence of Neurologic Disease Among Those in Same-Sex Relationships: Evidence from the Medical Expenditure Panel Survey.","authors":"Lennox Byer, Elan L Guterman, Nicole Rosendale","doi":"10.1212/CPJ.0000000000200385","DOIUrl":"https://doi.org/10.1212/CPJ.0000000000200385","url":null,"abstract":"<p><strong>Background and objectives: </strong>Prior research has shown several health disparities affecting sexual minority people. Research on the neurologic health of sexual minority people has been limited. Our objective was to characterize the prevalence of neurologic disease and utilization of a neurologist among a population of sexual minority people.</p><p><strong>Methods: </strong>We conducted a cross-sectional analysis of sexual minority people, using people in same-sex relationships as a proxy for sexual minority status, from the Medical Expenditure Panel Survey (MEPS) from 2016 to 2020. The MEPS is a government-run survey that uses complex sampling to obtain a nationally representative sample. Our primary outcome was a diagnosis of any neurologic disease. We also completed stratified analyses by sex, race, and ethnicity. Our secondary outcome was visit to a neurologist within the past year. Logistic regression was used to compare the odds of both outcomes in those in same-sex relationships and those in different-sex relationships.</p><p><strong>Results: </strong>Among 153,313 MEPS participants, there were 61,645 (40.2%) participants in relationships who were included in our sample. Of those, 822 (1.33%) participants were in same-sex relationships. Participants were, on average, aged 51 years (median 50 years, IQR 38-63); nearly 50% reported female sex and mostly non-Hispanic White (67.81%). Among those in same-sex relationships, 22.7% reported a neurologic diagnosis compared with 18.1% of those in different-sex relationships (OR 1.33; 95% CI 1.04-1.71). This difference was maintained with adjustment for age, sex, education, and insurance (OR 1.48; 95% CI 1.15-1.91). There was no significant difference in visit to a neurologist (adjusted OR 1.38; 95% CI 0.91-2.10).</p><p><strong>Discussion: </strong>In this nationally representative sample, neurologic disease was more prevalent among those in same-sex relationships compared with those in different-sex relationships. Limited sample size and absent measurements of minority stress limited the etiologic search for factors driving this disparity. There was no significant difference in visit to a neurologist, and both groups reported their overall health as being similar. There is a need for more routine measurement of sexual orientation in neurologic research. This will allow us to detail differences in neurologic disease risk factors, prevalence, and outcomes. The end goal is the identification of opportunities for intervention and advancement of neurologic health equity.</p>","PeriodicalId":19136,"journal":{"name":"Neurology. Clinical practice","volume":"15 1","pages":"e200385"},"PeriodicalIF":2.3,"publicationDate":"2025-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11464222/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142470879","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
Randomized Trial of Telegenetic Counseling for Gene Testing in Huntington Disease. 亨廷顿病基因检测远程遗传咨询随机试验。
IF 2.3 Q3 CLINICAL NEUROLOGY Pub Date : 2025-02-01 Epub Date: 2024-10-25 DOI: 10.1212/CPJ.0000000000200394
Deborah A Hall, Marc Rosenbaum, Jacob Hawkins, Bichun Ouyang, Christa Cooper, Neepa Patel

Background and objectives: The purpose of the study was to determine the feasibility and patient satisfaction of telegenetic counseling, or counseling done by video, for Huntington disease (HD). Background: Genetic counseling is necessary for presymptomatic or symptomatic HD genetic testing, but the lack of access to counseling because of geography or expense is a critical gap for many patients. The hypothesis of this study was that there would be no difference in patient satisfaction between telegenetic counseling (tele-GC) or in-person counseling (in-person GC) for HD testing.

Methods: This was a prospective, randomized, unblinded study of either tele-GC or in-person GC for HD gene testing. Participants had standardized genetic counseling in the clinic or through a Health Insurance Portability and Accountability Act (HIPAA) appropriate telemedicine platform first and then crossed over. A study coordinator interviewed the participant using a telehealth survey after each encounter.

Results: A total of 19 in-person GC and 15 tele-GC participants were included: 68% women, 41 ± 15 years, 80% White, 10% Hispanic, and +CAG repeat length = 45 ± 4.4 (n = 15) (p > 0.1). All participants were satisfied with their initial counseling experience when asked to rate on a scale of 1-10 (median 10/10, p = 0.94). The majority of symptomatic HD participants (5/7) preferred in-person GC. The main advantage of tele-GC was reduction in travel time for both in-person GC first (n = 16) and tele-GC first (n = 11) participants. Technical challenges were encountered in many of the participants. Visually seeing the genetic counselor improved understanding for in-person GC (n = 10) and tele-GC (n = 8) participants. Participants felt they were able to pick up on emotional cues (n = 33) and felt comfortable asking questions (n = 34) using the tele-GC format.

Discussion: Telegenetic counseling is a feasible option for HD gene testing, if patients are able to overcome technical issues. Having a video visit with both audio and video components, rather than an audio-only phone call, should be considered when using telegenetic counseling for HD. Finally, in-person counseling may be preferred to increase understanding of the genetic counseling materials in patients, especially in motor manifest HD.

背景和目的:本研究旨在确定亨廷顿病(HD)的电报遗传咨询(即通过视频进行的咨询)的可行性和患者满意度。背景:亨廷顿病(HD)的遗传咨询是一项非常必要的工作:遗传咨询对于症状前或有症状的亨廷顿氏病遗传检测是必要的,但由于地理位置或费用原因,许多患者无法获得遗传咨询,这是一个关键的缺口。本研究的假设是,在 HD 检测中,远程遗传咨询(telegenetic counseling,tele-GC)和面对面遗传咨询(in-person counseling,in-person GC)在患者满意度方面没有差异:这是一项前瞻性、随机、非盲法研究,研究对象是进行 HD 基因检测的远程遗传咨询或亲临现场遗传咨询的患者。参与者首先在诊所或通过符合《健康保险流通与责任法案》(HIPAA)的远程医疗平台接受标准化遗传咨询,然后进行交叉咨询。每次会面后,研究协调员都会通过远程医疗调查对参与者进行访谈:共纳入了 19 名面对面 GC 和 15 名远程 GC 参与者:68%为女性,41 ± 15 岁,80%为白人,10%为西班牙裔,+CAG 重复长度 = 45 ± 4.4(n = 15)(p > 0.1)。所有参与者都对他们最初的咨询经历表示满意,评分标准为 1-10 分(中位数为 10/10,P = 0.94)。大多数有症状的人类免疫缺陷病毒感染者(5/7)更喜欢面对面的 GC。远程 GC 的主要优势在于减少了首次面对面 GC(16 人)和首次远程 GC(11 人)参与者的旅行时间。许多参与者都遇到了技术难题。亲眼看到遗传咨询师提高了面对面遗传咨询(10 人)和远程遗传咨询(8 人)参与者的理解能力。参与者认为他们能够捕捉到情感线索(33 人),并对使用远程遗传咨询形式提问感到舒适(34 人):讨论:如果患者能够克服技术问题,远程遗传咨询是进行 HD 基因检测的可行选择。在使用 HD 基因检测远程咨询时,应考虑使用包含音频和视频内容的视频访问,而不是仅有音频的电话。最后,为增加患者对遗传咨询材料的理解,尤其是对运动表现型 HD 患者而言,当面咨询可能是首选。
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引用次数: 0
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Neurology. Clinical practice
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