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Identifying components of care coordination for primary brain tumor: A scoping review. 确定原发性脑肿瘤护理协调的组成部分:范围综述。
IF 2.4 Q2 CLINICAL NEUROLOGY Pub Date : 2025-01-09 eCollection Date: 2025-06-01 DOI: 10.1093/nop/npaf003
Megan S Jeon, Hannah Banks, Sharon He, Thomas Carlick, Joanne M Shaw, Brian Kelly, Eng-Siew Koh, Georgia K B Halkett, Tamara Ownsworth, Raymond J Chan, Mark B Pinkham, Ursula M Sansom-Daly, Haryana M Dhillon

For people with primary brain tumors (PBT) and their carers, care coordination (CC) offers comprehensive, timely, person-centered care. This review aimed to systematically scope the breadth of literature relevant to approaches to CC for PBT. Four databases were searched (PubMed, PsycINFO, EMBASE, and CINAHL) for empirical research, and gray literature was searched for doctoral theses, clinical guidelines, and education resources for healthcare professionals (HCPs) related to the concept/model of CC in neuro-oncology. Data were systematically evaluated and synthesized following PRISMA-SCR guidelines. From 1163 screened abstracts, 30 eligible reports were reviewed (13 addressed CC interventions, 9 narrative reports, 5 describing CC/navigator positions, and 3 clinical guidelines). Most reports described nurse-led models of care within single tertiary care centers in metropolitan settings: a single HCP acting as primary contact, educator, and liaison, screening patient/carer distress and providing referrals as key components of CC. Clinical guidelines emphasize healthcare system navigation and access to medical care in CC. A CC approach overseeing the whole PBT trajectory was lacking. Facilitators of CC included availability of HCP dedicated to CC; HCPs' competency in relationship-based and communication skills; and improved access to resources. System-level and resource barriers to CC were identified. Knowledge about CC is largely based on descriptions of nurse-led models of PBT care. Further research is required to refine the framework of CC reflecting factors of known importance in PBT care, and identify training and support needs of HCPs who may play a pivotal role in current models of neuro-oncology CC.

对于原发性脑肿瘤(PBT)患者及其护理人员,护理协调(CC)提供全面,及时,以人为本的护理。本综述旨在系统地探讨与PBT CC方法相关的文献广度。我们检索了PubMed、PsycINFO、EMBASE和CINAHL四个数据库进行实证研究,并检索了灰色文献,包括与神经肿瘤学CC概念/模型相关的博士论文、临床指南和医疗保健专业人员(HCPs)的教育资源。根据PRISMA-SCR指南对数据进行系统评估和合成。从1163个筛选摘要中,回顾了30个符合条件的报告(13个涉及CC干预,9个叙述性报告,5个描述CC/导航员位置,3个临床指南)。大多数报告描述了在大都市的单一三级医疗中心中护士主导的护理模式:单个HCP作为主要联系人,教育者和联络人,筛查患者/护理者的痛苦并提供转诊作为CC的关键组成部分。临床指南强调CC的医疗保健系统导航和获得医疗保健。缺乏监督整个PBT轨迹的CC方法。CC的促进因素包括专用于CC的HCP的可用性;医护人员的人际关系能力和沟通能力;改善了获取资源的途径。确定了CC的系统级和资源障碍。关于CC的知识很大程度上是基于护士主导的PBT护理模式的描述。需要进一步的研究来完善反映PBT护理中已知重要因素的CC框架,并确定可能在当前神经肿瘤CC模型中发挥关键作用的HCPs的培训和支持需求。
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引用次数: 0
A pilot study to quantify and describe personal social networks in patients with glioblastoma. 一项量化和描述胶质母细胞瘤患者个人社会网络的初步研究。
IF 2.5 Q2 CLINICAL NEUROLOGY Pub Date : 2025-01-08 eCollection Date: 2025-06-01 DOI: 10.1093/nop/npaf002
John Y Rhee, Carissa Mastrangelo, Paul J Miller, Gilbert Youssef, Zachary Tentor, Zachary R Rothfeld-Wehrwein, Vrushali A Dhongade, Vihang Nakhate, Tracy Batchelor, Amar Dhand

Background: Patients with glioblastoma experience high physical and psychosocial symptom burden. Poor social relationships have been shown to increase the risk of neurologic illnesses and decline, and conversely, strong personal social networks (PSN) have been shown to reduce the risk of mortality and improve quality of life. The aim of this pilot study is to determine the feasibility of measuring PSN in glioblastoma patients.

Methods: We recruited 25 adult glioblastoma patients between the initial diagnosis and the first cycle of adjuvant chemotherapy from March to September 2023 in the outpatient neuro-oncology clinic and adapted PERSNET, a quantitative PSN assessment tool, to this population. We collected demographics, tumor measures, treatment courses, and the European Organization for Research and Treatment of Cancer QOL for Patients with Brain Tumors (EORTC QLQ-BN20) and conducted qualitative interviews.

Results: The average age was 64.5 years old, 56% were female, and 84% had a Karnofsky Performance Status of 70 or higher. Patients had large network sizes (total size of patient's PSN; mean = 8.8). Participants stressed the importance of social support and how different people filled different roles in their oncology care. Behavioral and/or cognitive changes resulted in delayed presentation, and children, especially daughters, were important in advocating for presentation to the hospital.

Conclusion: This is the first proof-of-concept study showing that PSN can be measured in patients with glioblastoma. Qualitative data showed that patients felt social support was very important, and different people in their networks addressed different domains of care: physical, emotional, and logistical.

背景:胶质母细胞瘤患者具有较高的身体和心理症状负担。不良的社会关系已被证明会增加患神经系统疾病和衰退的风险,相反,强大的个人社会网络(PSN)已被证明可以降低死亡风险并提高生活质量。这项初步研究的目的是确定在胶质母细胞瘤患者中测量PSN的可行性。方法:我们于2023年3月至9月在门诊神经肿瘤诊所招募了25例初诊至第一轮辅助化疗期间的成年胶质母细胞瘤患者,并将PSN定量评估工具PERSNET应用于该人群。我们收集了人口统计资料、肿瘤测量、疗程和欧洲脑肿瘤患者癌症研究与治疗组织(EORTC QLQ-BN20)的生活质量,并进行了定性访谈。结果:平均年龄64.5岁,女性占56%,Karnofsky Performance Status≥70的占84%。患者网络规模较大(患者PSN总规模;平均值= 8.8)。参与者强调了社会支持的重要性,以及不同的人如何在肿瘤治疗中扮演不同的角色。行为和/或认知变化导致就诊延迟,儿童,特别是女儿,在倡导就诊方面很重要。结论:这是第一个概念验证研究,表明PSN可以在胶质母细胞瘤患者中测量。定性数据显示,患者认为社会支持非常重要,他们网络中的不同人处理不同的护理领域:身体,情感和后勤。
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引用次数: 0
Foreword. 前言。
IF 2.5 Q2 CLINICAL NEUROLOGY Pub Date : 2025-01-06 eCollection Date: 2025-02-01 DOI: 10.1093/nop/npae087
Martin J B Taphoorn
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引用次数: 0
Impact of neurotoxicity and steroid therapy on cancer progression-free survival in lymphoma patients treated with anti-CD19 CAR T cells. 神经毒性和类固醇治疗对接受抗cd19 CAR - T细胞治疗的淋巴瘤患者癌症无进展生存期的影响
IF 2.5 Q2 CLINICAL NEUROLOGY Pub Date : 2024-12-31 eCollection Date: 2025-06-01 DOI: 10.1093/nop/npae128
Umberto Pensato, Lorenzo Muccioli, Daniela Taurino, Federica Pondrelli, Gian Maria Asioli, Chiara de Philippis, Daniele Mannina, Gianmarco Bagnato, Simona Marcheselli, Pier Luigi Zinzani, Francesca Bonifazi, Stefania Bramanti, Maria Guarino

Background: Immune effector cell-associated neurotoxicity syndrome (ICANS) is a frequent complication of chimeric antigen receptor (CAR) T-cell therapy. Most patients achieve complete symptom resolution without long-term neurological sequelae, yet the impact of ICANS and steroid therapy on oncological outcomes remains inadequately explored. We investigated the association between ICANS and steroid therapy with progression-free survival (PFS).

Methods: We included large B-cell lymphoma patients treated with anti-CD19 CAR T cells. The primary outcome was 90-day PFS. The secondary outcomes included PFS, complete response, and overall survival (OS) at 30, 90, 180, and 365 days. The association between outcomes and ICANS and steroid treatment was assessed using logistic regression analyses adjusted for baseline factors.

Results: Overall, 241 patients were included. The median age was 60 years (interquartile range [IQR] = 51-66), 81 (33.6%) were females, 67 (27.8%) developed ICANS, and 142 (58.9%) achieved 90-day PFS. There was no association between 90-day PFS and ICANS development (adjusted odds ratio [aOR] 1.39 [95% confidence interval {CI} = 0.75-2.61]), maximum grade (aOR 1.24 [0.97-1.59]), duration (aOR 1.00 [95% CI = 0.95-1.05] per 1-day increase), or day of onset (aOR 0.98 [95% CI = 0.86-1.11] per 1-day increase). There was no association between 90-day PFS and steroid therapy (aOR 1.25 [95% CI = 0.73-2.14]) or cumulative dose (aOR 1.00 [95% CI = 0.98-1.01] per 100-mg increase). Similar results were observed for secondary outcomes, except for an association between ICANS and OS at 30 days (aOR 0.05 [95% CI = 0.01-0.54]) and 90 days (aOR 0.35 [95% CI = 0.15-0.80]).

Conclusions: Our findings suggest that ICANS and steroid therapy do not adversely impact the PFS in lymphoma patients receiving anti-CD19 CAR T cells. Yet, ICANS might be associated with reduced early OS.

背景:免疫效应细胞相关神经毒性综合征(ICANS)是嵌合抗原受体(CAR) t细胞治疗的常见并发症。大多数患者症状完全缓解,无长期神经系统后遗症,但ICANS和类固醇治疗对肿瘤预后的影响仍未充分探讨。我们调查了ICANS和类固醇治疗与无进展生存期(PFS)之间的关系。方法:我们纳入了用抗cd19 CAR - T细胞治疗的大b细胞淋巴瘤患者。主要终点为90天PFS。次要结局包括PFS、完全缓解和总生存期(30,90,180和365天)。采用调整基线因素的logistic回归分析评估结果与ICANS和类固醇治疗之间的关系。结果:共纳入241例患者。中位年龄为60岁(四分位间距[IQR] = 51-66),女性81例(33.6%),67例(27.8%)发生ICANS, 142例(58.9%)达到90天PFS。90天PFS与ICANS发展无关联(调整优势比[aOR] 1.39[95%可信区间{CI} = 0.75-2.61])、最大分级(aOR 1.24[0.97-1.59])、持续时间(每增加1天的aOR 1.00 [95% CI = 0.95-1.05])或发病天数(每增加1天的aOR 0.98 [95% CI = 0.86-1.11])。90天PFS与类固醇治疗(aOR 1.25 [95% CI = 0.73-2.14])或累积剂量(aOR 1.00 [95% CI = 0.98-1.01]每增加100毫克)没有关联。除了ICANS和OS在30天(aOR 0.05 [95% CI = 0.01-0.54])和90天(aOR 0.35 [95% CI = 0.15-0.80])之间存在关联外,次要结局也观察到了类似的结果。结论:我们的研究结果表明,ICANS和类固醇治疗不会对接受抗cd19 CAR - T细胞治疗的淋巴瘤患者的PFS产生不利影响。然而,ICANS可能与早期OS减少有关。
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引用次数: 0
Validation of the EORTC QLQ-C30 and QLQ-BN20, including WHO performance status interrater reliability, for evaluation of patients with intracranial meningiomas. EORTC QLQ-C30和QLQ-BN20评估颅内脑膜瘤患者的有效性验证,包括WHO性能状态互信度。
IF 2.4 Q2 CLINICAL NEUROLOGY Pub Date : 2024-12-24 eCollection Date: 2025-06-01 DOI: 10.1093/nop/npae125
Robert F Nilsson, Erik Ström, A Tommy Bergenheim, Rickard L Sjöberg, Peter Lindvall, Klas Holmgren

Background: The EORTC questionnaires QLQ-C30 and QLQ-BN20 are commonly used to evaluate health-related quality of life in patients with meningiomas but have not undergone a disease-specific validation. The study aimed to address this issue and to determine the interrater reliability of WHO performance status (PS) assessments in these patients.

Methods: This population-based study included prospectively enrolled intracranial meningiomas treated at Umeå University Hospital between October 14, 2010, and December 31, 2021, followed up until March 30, 2023. Patients were assessed by the EORTC questionnaires before and at 3 months after surgery. WHO PS categorized as high (0-1) or low (2-5) were evaluated for interrater reliability and used together with sick-leave status to determine the questionnaires' clinical validity. Remaining psychometric properties of the questionnaires were analyzed by conventional methods.

Results: Of 513 eligible surgeries, 454 (88.5%) had responded to at least 1 questionnaire. WHO PS interrater agreement was 94.4%. The EORTC questionnaires' ability to distinguish between clinically distinct groups was high. Items correlated better with their own scale than others (most r > 0.70). Items measuring various aspects of the same construct showed good internal consistency (nearly all α > 0.70). Questionnaire responsiveness to symptom changes over time was acceptable. Several scales displayed floor and ceiling effects.

Conclusions: The EORTC QLQ-C30 and QLQ-BN20 are overall valid instruments to evaluate patients with intracranial meningiomas but require awareness of certain limitations when specific functions and symptoms are addressed. WHO PS assessments can be applied to meningioma patients with high reproducibility between observers.

背景:EORTC问卷QLQ-C30和QLQ-BN20通常用于评估脑膜瘤患者的健康相关生活质量,但尚未经过疾病特异性验证。该研究旨在解决这一问题,并确定世卫组织在这些患者中的表现状态(PS)评估的相互可靠性。方法:这项基于人群的研究纳入了2010年10月14日至2021年12月31日期间在ume大学医院接受治疗的颅内脑膜瘤患者,随访至2023年3月30日。术前和术后3个月分别用EORTC问卷对患者进行评估。世卫组织PS分类为高(0-1)或低(2-5),对其进行互信度评估,并与病假状况一起用于确定问卷的临床效度。其余问卷的心理测量性质采用常规方法进行分析。结果:在513例符合条件的手术中,454例(88.5%)至少回答了1份问卷。WHO PS通俗者的一致性为94.4%。EORTC问卷区分临床不同组的能力很高。与其他项目相比,项目与自己的量表的相关性更好(大多数为0.70)。测量同一结构的不同方面的项目显示出良好的内部一致性(几乎所有α > 0.70)。问卷对症状随时间变化的反应是可以接受的。几个天平显示地板和天花板的效果。结论:EORTC QLQ-C30和QLQ-BN20总体上是评估颅内脑膜瘤患者的有效工具,但在处理特定功能和症状时需要注意一定的局限性。世卫组织PS评估可应用于脑膜瘤患者,在观察者之间具有高再现性。
{"title":"Validation of the EORTC QLQ-C30 and QLQ-BN20, including WHO performance status interrater reliability, for evaluation of patients with intracranial meningiomas.","authors":"Robert F Nilsson, Erik Ström, A Tommy Bergenheim, Rickard L Sjöberg, Peter Lindvall, Klas Holmgren","doi":"10.1093/nop/npae125","DOIUrl":"10.1093/nop/npae125","url":null,"abstract":"<p><strong>Background: </strong>The EORTC questionnaires QLQ-C30 and QLQ-BN20 are commonly used to evaluate health-related quality of life in patients with meningiomas but have not undergone a disease-specific validation. The study aimed to address this issue and to determine the interrater reliability of WHO performance status (PS) assessments in these patients.</p><p><strong>Methods: </strong>This population-based study included prospectively enrolled intracranial meningiomas treated at Umeå University Hospital between October 14, 2010, and December 31, 2021, followed up until March 30, 2023. Patients were assessed by the EORTC questionnaires before and at 3 months after surgery. WHO PS categorized as high (0-1) or low (2-5) were evaluated for interrater reliability and used together with sick-leave status to determine the questionnaires' clinical validity. Remaining psychometric properties of the questionnaires were analyzed by conventional methods.</p><p><strong>Results: </strong>Of 513 eligible surgeries, 454 (88.5%) had responded to at least 1 questionnaire. WHO PS interrater agreement was 94.4%. The EORTC questionnaires' ability to distinguish between clinically distinct groups was high. Items correlated better with their own scale than others (most <i>r</i> > 0.70). Items measuring various aspects of the same construct showed good internal consistency (nearly all α > 0.70). Questionnaire responsiveness to symptom changes over time was acceptable. Several scales displayed floor and ceiling effects.</p><p><strong>Conclusions: </strong>The EORTC QLQ-C30 and QLQ-BN20 are overall valid instruments to evaluate patients with intracranial meningiomas but require awareness of certain limitations when specific functions and symptoms are addressed. WHO PS assessments can be applied to meningioma patients with high reproducibility between observers.</p>","PeriodicalId":19234,"journal":{"name":"Neuro-oncology practice","volume":"12 3","pages":"467-477"},"PeriodicalIF":2.4,"publicationDate":"2024-12-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12137214/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144248931","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
Challenges in implementing 2021 WHO CNS tumor classification in a resource-limited setting. 在资源有限的情况下实施2021年WHO中枢神经系统肿瘤分类面临的挑战。
IF 2.5 Q2 CLINICAL NEUROLOGY Pub Date : 2024-12-23 eCollection Date: 2025-06-01 DOI: 10.1093/nop/npae124
Ahmed Gilani, Ahmed Altaf, Muhammad Shakir, Khurram Minhas, Syed Ather Enam

Background: The 2021 World Health Organization classification of Central Nervous System tumors (CNS5) includes molecular biomarkers in the necessary diagnostic criteria for many tumors. Identifying these markers often requires next-generation sequencing (NGS) and/or DNA methylation profiling, presenting challenges in diagnosing these tumors in low or middle-income countries (LMICs) and other resource-limited settings. Here, we will illustrate the real-world scope of the problem by presenting a neuropathologist's experience with implementing the CNS5 criteria in an academic medical center in Karachi, Pakistan.

Methods: CNS tumor biopsies received by a single neuropathologist (AG) in Karachi during a 6-month period (October 2022 to March 2023) were included in the study. Routine histologic processing, H&E and immunohistochemistry were performed.

Results: A total of 443 tumor cases were received, 87 of those (19.64% of total, 36.86% of glial, embryonal, and glioneuronal tumors) could not be assigned a CNS5 diagnosis. Top reasons for failure to reach a CNS5 diagnosis were low-grade gliomas or infiltrative glioma in pediatric/ adolescent young adults not further classifiable on histology, IDH-mutant tumors requiring 1p/19q testing to rule out oligodendroglioma, undifferentiated tumors with unclear lineage and adult grade 2 or 3 IDH-wildtype astrocytomas suspicious for glioblastoma, IDH-wildtype. Send-out DNA methylation testing in 22 cases resolved the diagnostic questions in all except one case.

Conclusions: Without access to molecular testing, up to a third of all glial, embryonal, and glioneuronal tumors could not be assigned a CNS5 diagnosis, leading to diagnostic ambiguity and therapeutic confusion. Until affordable molecular assays are available, CNS5 diagnostic criteria have limited applicability in resource-limited settings.

背景:2021年世界卫生组织中枢神经系统肿瘤分类(CNS5)将分子生物标志物纳入许多肿瘤的必要诊断标准。识别这些标记通常需要下一代测序(NGS)和/或DNA甲基化分析,这给低收入或中等收入国家(LMICs)和其他资源有限的环境中诊断这些肿瘤带来了挑战。在这里,我们将通过介绍一位神经病理学家在巴基斯坦卡拉奇的一个学术医疗中心实施CNS5标准的经验来说明这个问题的现实范围。方法:研究纳入了由卡拉奇一名神经病理学家(AG)在6个月期间(2022年10月至2023年3月)接受的中枢神经系统肿瘤活检。进行常规组织学处理、H&E和免疫组织化学。结果:共纳入443例肿瘤病例,其中87例(占总数的19.64%,占胶质、胚胎和胶质神经细胞肿瘤的36.86%)不能被分配到CNS5诊断。未能达到CNS5诊断的主要原因是:在儿童/青少年青年中不能在组织学上进一步分类的低级别胶质瘤或浸润性胶质瘤,需要进行1p/19q检测以排除少突胶质细胞瘤的idh突变肿瘤,谱系不明确的未分化肿瘤,可疑为胶质母细胞瘤的成人2级或3级idh野生型星形细胞瘤,idh野生型。22例外送DNA甲基化检测除1例外,其余均解决了诊断问题。结论:在没有分子检测的情况下,多达三分之一的神经胶质、胚胎和神经胶质细胞肿瘤无法进行CNS5诊断,导致诊断模糊和治疗混乱。在可负担得起的分子测定方法可用之前,CNS5诊断标准在资源有限的环境中适用性有限。
{"title":"Challenges in implementing 2021 WHO CNS tumor classification in a resource-limited setting.","authors":"Ahmed Gilani, Ahmed Altaf, Muhammad Shakir, Khurram Minhas, Syed Ather Enam","doi":"10.1093/nop/npae124","DOIUrl":"10.1093/nop/npae124","url":null,"abstract":"<p><strong>Background: </strong>The 2021 World Health Organization classification of Central Nervous System tumors (CNS5) includes molecular biomarkers in the necessary diagnostic criteria for many tumors. Identifying these markers often requires next-generation sequencing (NGS) and/or DNA methylation profiling, presenting challenges in diagnosing these tumors in low or middle-income countries (LMICs) and other resource-limited settings. Here, we will illustrate the real-world scope of the problem by presenting a neuropathologist's experience with implementing the CNS5 criteria in an academic medical center in Karachi, Pakistan.</p><p><strong>Methods: </strong>CNS tumor biopsies received by a single neuropathologist (AG) in Karachi during a 6-month period (October 2022 to March 2023) were included in the study. Routine histologic processing, H&E and immunohistochemistry were performed.</p><p><strong>Results: </strong>A total of 443 tumor cases were received, 87 of those (19.64% of total, 36.86% of glial, embryonal, and glioneuronal tumors) could not be assigned a CNS5 diagnosis. Top reasons for failure to reach a CNS5 diagnosis were low-grade gliomas or infiltrative glioma in pediatric/ adolescent young adults not further classifiable on histology, IDH-mutant tumors requiring 1p/19q testing to rule out oligodendroglioma, undifferentiated tumors with unclear lineage and adult grade 2 or 3 IDH-wildtype astrocytomas suspicious for glioblastoma, IDH-wildtype. Send-out DNA methylation testing in 22 cases resolved the diagnostic questions in all except one case.</p><p><strong>Conclusions: </strong>Without access to molecular testing, up to a third of all glial, embryonal, and glioneuronal tumors could not be assigned a CNS5 diagnosis, leading to diagnostic ambiguity and therapeutic confusion. Until affordable molecular assays are available, CNS5 diagnostic criteria have limited applicability in resource-limited settings.</p>","PeriodicalId":19234,"journal":{"name":"Neuro-oncology practice","volume":"12 3","pages":"401-412"},"PeriodicalIF":2.5,"publicationDate":"2024-12-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12137215/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144248918","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
When survival is not enough-Quality of life as a decision endpoint for patients. 当生存期不够时-生活质量作为患者的决定终点。
IF 2.5 Q2 CLINICAL NEUROLOGY Pub Date : 2024-12-21 eCollection Date: 2025-04-01 DOI: 10.1093/nop/npae123
Tobias Walbert
{"title":"When survival is not enough-Quality of life as a decision endpoint for patients.","authors":"Tobias Walbert","doi":"10.1093/nop/npae123","DOIUrl":"10.1093/nop/npae123","url":null,"abstract":"","PeriodicalId":19234,"journal":{"name":"Neuro-oncology practice","volume":"12 2","pages":"177-178"},"PeriodicalIF":2.5,"publicationDate":"2024-12-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11913642/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143664117","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
Exploring spirituality in everyday neuro-oncology practice - nurses' and physicians' spiritual care toolbox. 探索精神在日常神经肿瘤实践-护士和医生的精神护理工具箱。
IF 2.5 Q2 CLINICAL NEUROLOGY Pub Date : 2024-12-19 eCollection Date: 2025-06-01 DOI: 10.1093/nop/npae120
Daniela Völz, Reinhard Grabenweger, Megan C Best, Peter Hau, Kate F Jones, Ralf Linker, Piret Paal, Elisabeth Bumes

Background: Patients with primary malignant brain tumors suffer from symptoms of both neoplastic and neurological disease, resulting in a limited prognosis and high symptomatic burden, including aphasia and mental deterioration. Thus, special spiritual care needs arise for these patients, which may be challenging. We explore spiritual tools that neurological and neurosurgical healthcare workers use when confronted with spiritual distress of their patients.

Methods: A vignette-based, cross-sectional, multicenter online survey was conducted to collect qualitative data. In total, 143 nurses and physicians working on 41 neurological and neurosurgical units in Bavarian hospitals participated and their self-reported behavior was analyzed using reflexive thematic analysis.

Results: A total of 5 themes regarding the spiritual tools implemented by nurses and physicians in neuro-oncology were generated: (1) from physical to spiritual care, (2) feeling togetherness between the words, (3) listening to each other: one word at a time, (4) away from the dooming "why"-escaping the thought spirals, and (5) taking life back into one's own hands. These themes represent a spectrum including nonverbal tools like building a physical connection, allowing for emotional connection, and active listening. The verbal approach focuses on conversation strategies to relieve patients of guilt, facilitate spiritual discussions at the end-of-life, and communicate the diagnosis, prognosis, and treatment to strengthen self-efficacy.

Conclusions: Verbal, nonverbal, and holistic approaches to spiritual care in neuro-oncology were identified and can be used to develop a spiritual care toolbox for nurses and physicians in neuro-oncology, given the unique needs of patients with primary malignant brain tumors.

背景:原发性恶性脑肿瘤患者具有肿瘤和神经系统疾病的双重症状,导致预后有限和症状负担高,包括失语和精神恶化。因此,这些病人需要特殊的精神护理,这可能是具有挑战性的。我们探索精神的工具,神经和神经外科保健工作者使用时,面对精神痛苦的病人。方法:采用基于图像的、横断面的、多中心的在线调查收集定性数据。共有来自巴伐利亚州医院41个神经和神经外科单位的143名护士和医生参与了调查,并使用自反性主题分析分析了他们的自我报告行为。结果:关于神经肿瘤学护士和医生实施的精神工具,共产生了5个主题:(1)从身体护理到精神护理,(2)感受话语之间的团结,(3)倾听彼此:一次一个词,(4)远离宿命的“为什么”-逃离思想螺旋,(5)把生命重新掌握在自己手中。这些主题代表了一系列非语言工具,如建立身体联系,允许情感联系和积极倾听。口头方法侧重于对话策略,以减轻患者的罪恶感,促进临终时的精神讨论,并沟通诊断,预后和治疗,以增强自我效能感。结论:基于原发性恶性脑肿瘤患者的独特需求,神经肿瘤科的护士和医生可以使用语言、非语言和整体的精神护理方法来开发精神护理工具箱。
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引用次数: 0
Brain tumors and fitness to drive: A review and multi-disciplinary approach. 脑肿瘤和健康驱动:回顾和多学科方法。
IF 2.5 Q2 CLINICAL NEUROLOGY Pub Date : 2024-12-06 eCollection Date: 2025-04-01 DOI: 10.1093/nop/npae119
Mark Willy L Mondia, Edward K Avila, Jeffrey S Wefel, Rachel F Hehn, Alex R Bowers, Brian S Cox, Daniel J Cox, David Schiff

Background: Patients with brain tumors and their families often inquire about driving safety. Currently, there is no consensus regarding fitness-to-drive (FTD) for patients with central nervous system tumors. Our paper aims to provide a multi-disciplinary perspective to address this issue.

Methods: We performed a literature review for brain tumors and driving. Additionally, we solicited input from experts in tumor-related epilepsy, ophthalmology, neuropsychology, occupational therapy, and driving simulators.

Results: We qualitatively analyzed 14 published articles. FTD determination varies internationally and regionally in most developed nations. Significant motor weakness and major cognitive impairment clearly prevent patients from driving. There are specialized tests for motor, vision, and cognitive correlates important to driving, but driving simulators and on-the-road tests provide the most comprehensive assessments. FTD for patients with seizures is dependent on region-specific laws that take into account the duration of seizure-free intervals and history of motor vehicular crashes.

Conclusions: We recommend a symptom-based approach that highlights the importance of interdisciplinary assessment to ensure that brain tumor patients have the minimum operational skills required to drive. It is crucial to document seizure control, visual acuity impairment, and visual field deficits because these factors usually become the default basis in practice to determine if driving privileges can be maintained. Appropriately, timed assessment of cognitive function may provide pertinent information to determine FTD. Formalized testing with practical driving evaluation may eventually be necessary in patients who have hemiparesis, hemiplegia, hemineglect, homonymous visual field loss, or any form of cognitive dysfunction to determine FTD.

背景:脑肿瘤患者及其家属经常询问驾驶安全问题。目前,对于中枢神经系统肿瘤患者的适应度驱动(FTD)尚未达成共识。本文旨在提供一个多学科的视角来解决这一问题。方法:回顾脑肿瘤与驾驶的相关文献。此外,我们还征求了肿瘤相关癫痫、眼科、神经心理学、职业治疗和驾驶模拟器方面的专家的意见。结果:对14篇已发表文章进行定性分析。在大多数发达国家,对外贸易壁垒的确定在国际和区域上各不相同。明显的运动无力和严重的认知障碍使患者无法驾驶。有专门测试运动、视觉和认知相关的重要驾驶,但驾驶模拟器和道路测试提供了最全面的评估。癫痫发作患者的FTD取决于特定区域的法律,这些法律考虑到无癫痫发作间隔的持续时间和机动车碰撞史。结论:我们推荐一种基于症状的方法,强调跨学科评估的重要性,以确保脑肿瘤患者具备驾驶所需的最低操作技能。记录癫痫发作控制、视力损害和视野缺陷是至关重要的,因为这些因素通常成为确定是否可以维持驾驶特权的默认基础。适当地,对认知功能的定时评估可以为确定FTD提供相关信息。对于偏瘫、偏瘫、半忽视、同向视野丧失或任何形式的认知功能障碍的患者,最终可能需要正式的驾驶评估测试来确定FTD。
{"title":"Brain tumors and fitness to drive: A review and multi-disciplinary approach.","authors":"Mark Willy L Mondia, Edward K Avila, Jeffrey S Wefel, Rachel F Hehn, Alex R Bowers, Brian S Cox, Daniel J Cox, David Schiff","doi":"10.1093/nop/npae119","DOIUrl":"10.1093/nop/npae119","url":null,"abstract":"<p><strong>Background: </strong>Patients with brain tumors and their families often inquire about driving safety. Currently, there is no consensus regarding fitness-to-drive (FTD) for patients with central nervous system tumors. Our paper aims to provide a multi-disciplinary perspective to address this issue.</p><p><strong>Methods: </strong>We performed a literature review for brain tumors and driving. Additionally, we solicited input from experts in tumor-related epilepsy, ophthalmology, neuropsychology, occupational therapy, and driving simulators.</p><p><strong>Results: </strong>We qualitatively analyzed 14 published articles. FTD determination varies internationally and regionally in most developed nations. Significant motor weakness and major cognitive impairment clearly prevent patients from driving. There are specialized tests for motor, vision, and cognitive correlates important to driving, but driving simulators and on-the-road tests provide the most comprehensive assessments. FTD for patients with seizures is dependent on region-specific laws that take into account the duration of seizure-free intervals and history of motor vehicular crashes.</p><p><strong>Conclusions: </strong>We recommend a symptom-based approach that highlights the importance of interdisciplinary assessment to ensure that brain tumor patients have the minimum operational skills required to drive. It is crucial to document seizure control, visual acuity impairment, and visual field deficits because these factors usually become the default basis in practice to determine if driving privileges can be maintained. Appropriately, timed assessment of cognitive function may provide pertinent information to determine FTD. Formalized testing with practical driving evaluation may eventually be necessary in patients who have hemiparesis, hemiplegia, hemineglect, homonymous visual field loss, or any form of cognitive dysfunction to determine FTD.</p>","PeriodicalId":19234,"journal":{"name":"Neuro-oncology practice","volume":"12 2","pages":"183-196"},"PeriodicalIF":2.5,"publicationDate":"2024-12-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11913653/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143664076","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
Role of the tumor board when prescribing mutant isocitrate dehydrogenase inhibitors to patients with isocitrate dehydrogenase-mutant glioma. 肿瘤委员会在给异柠檬酸脱氢酶突变胶质瘤患者开突变异柠檬酸脱氢酶抑制剂时的作用。
IF 2.5 Q2 CLINICAL NEUROLOGY Pub Date : 2024-12-04 eCollection Date: 2025-02-01 DOI: 10.1093/nop/npae100
Patrick Roth, David Capper, Evan Calabrese, Lia M Halasz, Asgeir S Jakola

Isocitrate dehydrogenase (IDH)-mutant gliomas, comprising both astrocytomas and oligodendrogliomas, represent a distinct group of tumors that pose an interdisciplinary challenge. Addressing the needs of affected patients requires close collaboration among various disciplines, including neuropathology, neuroradiology, neurosurgery, radiation oncology, neurology, medical oncology, and other relevant specialties when necessary. Interdisciplinary tumor boards are central in determining the ideal diagnostic and therapeutic strategies for these patients. The key tasks of a tumor board include the evaluation of imaging findings, selecting the appropriate surgical approach, discussing additional treatment options, and identification/determination of tumor recurrence and progression. In addition to established treatments such as radiotherapy and alkylating chemotherapy, patients with an isocitrate dehydrogenase (IDH)-mutant glioma for whom additional treatment is indicated may now also have the option of receiving treatment with an mutant isocitrate dehydrogenase inhibitor such as vorasidenib or ivosidenib. In this regard, the collaborative nature of tumor boards becomes even more crucial for evaluating comprehensively the needs of these patients. Through interdisciplinary discussions, tumor boards aim to develop personalized treatment strategies that maximize therapeutic efficacy while minimizing potential side effects and preserving patients' quality of life.

异柠檬酸脱氢酶(IDH)突变胶质瘤,包括星形细胞瘤和少突胶质细胞瘤,代表了一组独特的肿瘤,提出了跨学科的挑战。解决受影响患者的需求需要各学科之间的密切合作,包括神经病理学、神经放射学、神经外科、放射肿瘤学、神经病学、内科肿瘤学和其他必要的相关专业。跨学科肿瘤委员会在为这些患者确定理想的诊断和治疗策略方面发挥着核心作用。肿瘤委员会的主要任务包括影像学表现的评估,选择合适的手术入路,讨论额外的治疗方案,以及肿瘤复发和进展的识别/确定。除了放疗和烷基化化疗等已建立的治疗方法外,异柠檬酸脱氢酶(IDH)突变胶质瘤患者现在也可以选择接受异柠檬酸脱氢酶突变抑制剂(如vorasidenib或ivosidenib)的治疗。在这方面,肿瘤委员会的协作性质对于全面评估这些患者的需求变得更加重要。通过跨学科的讨论,肿瘤委员会旨在制定个性化的治疗策略,最大限度地提高治疗效果,同时最大限度地减少潜在的副作用,并保持患者的生活质量。
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Neuro-oncology practice
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