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Imaging progression after radiotherapy for IDH mutant low-grade glioma: Sometimes it is best to stay calm and stay the course. IDH突变型低级别胶质瘤放疗后的影像学进展:有时最好保持冷静,坚持治疗。
IF 2.5 Q2 CLINICAL NEUROLOGY Pub Date : 2025-05-30 eCollection Date: 2025-08-01 DOI: 10.1093/nop/npaf055
Solmaz Sahebjam, Lawrence Kleinberg
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引用次数: 0
Just a bit outside: An attempt to improve overlooked symptoms and how this may be accomplished. 稍外一点:试图改善被忽视的症状,以及如何做到这一点。
IF 2.5 Q2 CLINICAL NEUROLOGY Pub Date : 2025-05-30 eCollection Date: 2025-08-01 DOI: 10.1093/nop/npaf054
Patrick Regis, Megan Kranz, Robert Cavaliere
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引用次数: 0
Healthcare professionals' perspectives on barriers and facilitators to managing brain tumor-related personality and behavior changes. 医疗保健专业人员对管理脑肿瘤相关人格和行为改变的障碍和促进因素的看法。
IF 2.5 Q2 CLINICAL NEUROLOGY Pub Date : 2025-05-28 eCollection Date: 2025-12-01 DOI: 10.1093/nop/npaf053
Emma McDougall, Haryana M Dhillon, Lauren J Breen, Anna K Nowak, Georgia K B Halkett

Background: This study aimed to identify healthcare professionals' perceptions of the facilitators and barriers impacting the management of brain tumor-related personality and behavior changes in adults.

Methods: We conducted semi-structured interviews with neuro-oncology healthcare professionals' working in Australia (N = 22). Interview recordings were transcribed, and codebook thematic analysis methods applied.

Results: Two themes identified as barriers in managing brain tumor-related personality changes were (1) Systemic challenges, with two sub themes of "fall between the gaps" and waitlist and unavailability of services and (2) patient and carer factors, comprising three sub-themes of "evolving injury," complexities of non-disclosure, and attitudes toward help seeking. Two themes identified as facilitators were (1) systemic supports for healthcare professionals encompassing three sub-themes; stepped care model, multidisciplinary team approach, and professional development opportunities. The second facilitator theme was (2) infrastructure, with four sub-themes: accessible specialist care with follow-up, up-to-date information resources, carer supports, and Cancer Care Coordinator model.

Conclusions: The findings emphasize the need for improved infrastructure and systemic supports for healthcare professionals to allow for a more integrated approach with routine screening of psychosocial needs including patient personality and behavior changes, timely referrals, and multidisciplinary team care across the disease trajectory. Addressing barriers and promoting facilitators is essential for improving the quality of life for people with brain tumor and reducing the potential for burden on carers related to personality and behavior changes. Results of this study provide a starting point with a proposed stepped-care approach that requires further testing in clinical practice.

背景:本研究旨在确定医疗保健专业人员对影响成人脑肿瘤相关人格和行为改变管理的促进因素和障碍的看法。方法:我们对在澳大利亚工作的神经肿瘤学保健专业人员进行了半结构化访谈(N = 22)。对访谈录音进行转录,并采用代码本专题分析方法。结果:两个主题被确定为管理脑肿瘤相关人格改变的障碍:(1)系统挑战,包括两个子主题:“落在差距之间”和等待名单和服务的不可获得性;(2)患者和护理人员因素,包括三个子主题:“不断发展的伤害”,保密的复杂性,以及对寻求帮助的态度。确定为促进因素的两个主题是:(1)对医疗保健专业人员的系统支持,包括三个子主题;阶梯式护理模式,多学科团队方法,专业发展机会。第二个促进主题是(2)基础设施,包括四个子主题:无障碍专科护理与随访、最新信息资源、护理人员支持和癌症护理协调员模型。结论:研究结果强调需要改善基础设施和系统支持医疗保健专业人员,以允许更综合的方法进行常规筛查心理社会需求,包括患者个性和行为变化,及时转诊,以及跨疾病轨迹的多学科团队护理。解决障碍和促进促进对于改善脑肿瘤患者的生活质量和减少与人格和行为改变有关的护理人员的潜在负担至关重要。本研究的结果提供了一个起点,提出了一个循序渐进的护理方法,需要在临床实践中进一步测试。
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引用次数: 0
Site of first treatment failure after standard-of-care for newly diagnosed glioblastoma in a Danish cohort. 丹麦队列中新诊断的胶质母细胞瘤的标准治疗后首次治疗失败的部位。
IF 2.5 Q2 CLINICAL NEUROLOGY Pub Date : 2025-05-28 eCollection Date: 2025-12-01 DOI: 10.1093/nop/npaf051
Alice Mary Clarke, Slavka Lukacova, Rikke Hedegaard Dahlrot, Charlotte Aaquist Haslund, Aida Muhic, Jesper Folsted Kallehauge, Kasper Lind Laursen, Christian Rønn Hansen, Bob Smulders, Anouk Kirsten Trip

Background: The aim of this nationwide study was to identify predictive factors for isolated local, non-local, and combined treatment failure in newly diagnosed glioblastoma patients.

Methods: All adults with newly diagnosed glioblastoma in Denmark between 2014 and 2019 who were planned for long-course (chemo)radiotherapy were included. The MRI scan of first progression following RANO criteria was used to assess the site of failure. Multivariable multinomial logistic regression was applied to analyze the association between potential risk factors and the site of failure. Prediction models were derived.

Results: We included 939 patients, of whom 758 had radiographic progression. Of those, 525 patients (69%) had isolated local failure, 114 (15%) non-local, and 119 (16%) combined. In patients with an MGMT promotor methylated (300) versus unmethylated (398) tumor, local failure was 66 versus 73%, non-local 21 versus 10%, and combined 12 versus 17%, respectively (P-value < .001). In multivariable analysis, MGMT promotor methylation status and tumor location were significantly associated with the failure site. In a model using MGMT promotor methylation status, tumor location, focality, extent of resection, and WHO performance status (poorly calibrated, C-index 0.63), the predicted probability (95% CI) of local failure varied from 0.47 (0.24 to 0.70) to 0.85 (0.74 to 0.97) between respective subgroups. That of non-local varied from 0.03 (0.00 to 0.07) to 0.36 (0.15 to 0.57) and combined from 0.05 (0.03 to 0.14) to 0.35 (0.05 to 0.65).

Conclusions: It was not feasible to identify strong predictors for the site of first treatment failure, and hence, to derive an accurate prediction model. Isolated local failure was dominant in both patients with an MGMT promotor methylated and unmethylated tumor.

背景:这项全国性研究的目的是确定新诊断的胶质母细胞瘤患者局部、非局部和联合治疗失败的预测因素。方法:纳入2014年至2019年丹麦所有新诊断的胶质母细胞瘤成人,并计划进行长疗程(化疗)放疗。采用符合RANO标准的首次进展MRI扫描来评估失败部位。采用多变量多项式logistic回归分析潜在危险因素与失效部位的关系。推导了预测模型。结果:我们纳入了939例患者,其中758例有影像学进展。其中,525例(69%)患者有孤立的局部衰竭,114例(15%)非局部衰竭,119例(16%)合并局部衰竭。在MGMT启动子甲基化(300)与非甲基化(398)肿瘤患者中,局部失败分别为66对73%,非局部21对10%,合并12对17% (p值MGMT启动子甲基化状态和肿瘤位置与失败部位显著相关)。在一个使用MGMT启动子甲基化状态、肿瘤位置、病灶、切除程度和WHO表现状态(校准不良,c指数0.63)的模型中,各亚组局部失败的预测概率(95% CI)从0.47(0.24至0.70)到0.85(0.74至0.97)不等。非本地的变化范围为0.03(0.00 ~ 0.07)~ 0.36(0.15 ~ 0.57),组合范围为0.05(0.03 ~ 0.14)~ 0.35(0.05 ~ 0.65)。结论:确定首次治疗失败部位的强预测因子是不可行的,因此,推导出准确的预测模型。在MGMT启动子甲基化和非甲基化肿瘤患者中,孤立的局部失败占主导地位。
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引用次数: 0
Analysis of outcomes of patients with oligodendroglioma with focus on volumetric reduction. 以体积缩小为重点的少突胶质细胞瘤患者结局分析。
IF 2.5 Q2 CLINICAL NEUROLOGY Pub Date : 2025-05-28 eCollection Date: 2025-12-01 DOI: 10.1093/nop/npaf052
Salman T Shaikh, Mueez Waqar, Yatharth Verma, James A Balogun, Joshua MacArthur, Helen Maye, Matthew Bailey, Konstantina Karabatsou, Ibrahim Djoukhadar, Catherine McBain, Karan Patel, Rovel Colaco, Gerben Borst, Federico Roncaroli, Pietro D'Urso

Background: This study aims to evaluate the surgical outcomes and prognostic factors influencing overall survival (OS) and progression-free survival (PFS) in patients with molecularly confirmed oligodendrogliomas focussing on the extent of resection (EOR) and volumetric analysis.

Methods: We conducted a retrospective analysis of 115 adult patients with oligodendroglioma at our institution from January 2010 to December 2020. Inclusion criteria encompassed histologically and molecularly confirmed grade 2 and 3 oligodendroglioma, age above 18 years, availability of pre- and postoperative imaging, and complete follow-up data. Surgical outcomes were categorized by EOR and volumetric assessments were performed using neuroimaging. Mean OS and PFS were calculated using the Kaplan-Meier method (As mortality was < 50%) and univariate/multivariate analyses were conducted to identify prognostic factors.

Results: The cohort had a median age of 42 years (range 18-77), with GTR achieved in 47% of primary operations. Median follow-up was 6.3 years. OS was significantly influenced by age (p < 0.0001) and EOR, with a mean OS of 134 months and a mean PFS of 117 months. Volumetric reduction of tumor volume greater than 80% correlated positively with both OS and PFS. The analysis also highlighted the importance of adjuvant therapy in improving PFS.

Conclusion: This study confirms that younger age, extensive volumetric reduction, and intraoperative adjuncts are associated with improved OS and PFS in patients with oligodendroglioma. While the EOR impacts OS significantly in grade 3 tumors, further research is necessary to determine optimal surgical strategies for grade 2 oligodendrogliomas.

背景:本研究旨在评估影响分子证实的少突胶质细胞瘤患者总生存期(OS)和无进展生存期(PFS)的手术结果和预后因素,重点关注切除程度(EOR)和体积分析。方法:我们对2010年1月至2020年12月在我院治疗的115例成年少突胶质细胞瘤患者进行了回顾性分析。纳入标准包括组织学和分子证实的2级和3级少突胶质细胞瘤,年龄大于18岁,可获得术前和术后影像,以及完整的随访数据。手术结果通过EOR进行分类,并使用神经影像学进行体积评估。使用Kaplan-Meier方法计算平均OS和PFS(死亡率为)结果:队列的中位年龄为42岁(范围18-77岁),47%的原发性手术实现了GTR。中位随访时间为6.3年。结论:本研究证实,年龄较小、体积广泛缩小和术中辅助治疗与少突胶质细胞瘤患者的OS和PFS改善相关。虽然EOR对3级肿瘤的OS有显著影响,但需要进一步的研究来确定2级少突胶质细胞瘤的最佳手术策略。
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引用次数: 0
End-of-life care in patients with glioblastoma after early advance care planning. 胶质母细胞瘤患者早期护理计划后的临终关怀。
IF 2.5 Q2 CLINICAL NEUROLOGY Pub Date : 2025-05-22 eCollection Date: 2025-10-01 DOI: 10.1093/nop/npaf050
Lara Fritz, Esther Zaloumis, Hanneke Zwinkels, Jaap C Reijneveld, Maaike J Vos, H Roeline W Pasman, Linda Dirven, Johan A F Koekkoek, Martin J B Taphoorn

Background: We aimed to evaluate the preferred and received end-of-life (EoL) care in glioblastoma patients who participated in a local nurse-led advance care planning (ACP) program, as well as the perceived quality of care.

Methods: Twelve proxies of patients with glioblastoma who participated in an ACP program completed a study-specific questionnaire after the patient deceased, comprising the following topics: organization of EoL care, patient's preferences and wishes, received care during the last 3 months, and proxies' experiences with EoL care. The outcomes were compared with those from a historical cohort of Dutch patients with glioblastoma (n = 71) who did not receive ACP.

Results: Nine out of 12 patients lived at home 3 months before death and most (8/12) died at home. In 11/12 cases, the general practitioner was responsible for EoL care in the last week before death. Proxies indicated that most patients rated their quality of received EoL care as very good to excellent in the last 3 months and last week before death (67% and 75%, respectively), that 8/12 patients died with dignity and that all proxies were involved as much as they wanted in decision-making. One-third of the patients in the ACP cohort were relocated at least once in the last 3 months versus 48% of the patients in the historical cohort.

Conclusions: Despite the limited number of participants, this study suggests that a nurse-led ACP program has a positive impact on several aspects of EoL care for patients with glioblastoma.

背景:我们的目的是评估参与当地护士主导的预先护理计划(ACP)项目的胶质母细胞瘤患者的首选和接受的临终(EoL)护理,以及护理的感知质量。方法:12名参与ACP计划的胶质母细胞瘤患者在患者去世后完成了一份研究特定问卷,包括以下主题:EoL护理的组织,患者的偏好和愿望,过去3个月接受的护理,以及代理人的EoL护理经验。这些结果与未接受ACP治疗的荷兰胶质母细胞瘤患者的历史队列(n = 71)进行了比较。结果:12例患者中有9例在死亡前3个月生活在家中,多数(8/12)在家中死亡。在11/12的病例中,全科医生在死亡前的最后一周负责EoL护理。代理表明,大多数患者在死亡前的最后3个月和最后一周(分别为67%和75%)将他们接受的EoL护理质量评价为非常好到优秀,8/12患者有尊严地死亡,所有代理都尽可能多地参与决策。ACP队列中三分之一的患者在过去3个月内至少搬迁过一次,而历史队列中这一比例为48%。结论:尽管参与者数量有限,但本研究表明,护士主导的ACP计划对胶质母细胞瘤患者EoL护理的几个方面具有积极影响。
{"title":"End-of-life care in patients with glioblastoma after early advance care planning.","authors":"Lara Fritz, Esther Zaloumis, Hanneke Zwinkels, Jaap C Reijneveld, Maaike J Vos, H Roeline W Pasman, Linda Dirven, Johan A F Koekkoek, Martin J B Taphoorn","doi":"10.1093/nop/npaf050","DOIUrl":"https://doi.org/10.1093/nop/npaf050","url":null,"abstract":"<p><strong>Background: </strong>We aimed to evaluate the preferred and received end-of-life (EoL) care in glioblastoma patients who participated in a local nurse-led advance care planning (ACP) program, as well as the perceived quality of care.</p><p><strong>Methods: </strong>Twelve proxies of patients with glioblastoma who participated in an ACP program completed a study-specific questionnaire after the patient deceased, comprising the following topics: organization of EoL care, patient's preferences and wishes, received care during the last 3 months, and proxies' experiences with EoL care. The outcomes were compared with those from a historical cohort of Dutch patients with glioblastoma (<i>n</i> = 71) who did not receive ACP.</p><p><strong>Results: </strong>Nine out of 12 patients lived at home 3 months before death and most (8/12) died at home. In 11/12 cases, the general practitioner was responsible for EoL care in the last week before death. Proxies indicated that most patients rated their quality of received EoL care as very good to excellent in the last 3 months and last week before death (67% and 75%, respectively), that 8/12 patients died with dignity and that all proxies were involved as much as they wanted in decision-making. One-third of the patients in the ACP cohort were relocated at least once in the last 3 months versus 48% of the patients in the historical cohort.</p><p><strong>Conclusions: </strong>Despite the limited number of participants, this study suggests that a nurse-led ACP program has a positive impact on several aspects of EoL care for patients with glioblastoma.</p>","PeriodicalId":19234,"journal":{"name":"Neuro-oncology practice","volume":"12 5","pages":"821-829"},"PeriodicalIF":2.5,"publicationDate":"2025-05-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12508743/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145280794","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
A single-institution study of the natural history of fibroblast growth factor receptor-altered gliomas. 成纤维细胞生长因子受体改变胶质瘤自然历史的单机构研究。
IF 2.5 Q2 CLINICAL NEUROLOGY Pub Date : 2025-05-13 eCollection Date: 2025-10-01 DOI: 10.1093/nop/npaf031
Maya Viera, Christopher W Mount, Dora Dias-Santagata, Julie J Miller, Elizabeth R Gerstner

Background: Fibroblast growth factor receptor (FGFR) alterations are potential oncogenic drivers that occur in a subset of patients with gliomas, but the natural history of these tumors is not clearly defined. An understanding of outcomes of FGFR-driven glioma has implications for targeted drug development for FGFR inhibitors, which are approved for other cancers.

Methods: We performed a retrospective cohort study of patients with gliomas who harbored FGFR alterations, including fusions, single nucleotide variant (SNV), and copy number variant (CNV) alterations seen at Massachusetts General Hospital between 2003 and 2023. The electronic medical record was searched to identify additional molecular data, treatment, and MRI scans. Kaplan-Meier analysis was used to assess progression-free and overall survival (OS).

Results: Thirty-one patients with glioblastoma (GBM), diffuse astrocytoma, and glioneuronal tumors with FGFR alterations were identified: 17 with FGFR fusions, 10 with SNV, and 4 with CNV. FGFR3-TACC3 was the most common fusion in patients with GBM or diffuse astrocytoma. Median OS in patients with GBM was 2.75 years, despite 55% of tumors having an unmethylated MGMT promoter. There were no clearly co-occurring mutations with an FGFR alteration. Of 7 patients who underwent subsequent surgery, 6 lost the original FGFR alteration. No patient received an FGFR inhibitor.

Conclusions: While FGFR alterations are rare in glioma, patients with FGFR-altered GBM may have prolonged survival, which has implications for clinical trial design. We found loss of FGFR alteration at the time of subsequent surgery, raising concern for the therapeutic potential of FGFR-targeting agents in recurrent gliomas.

背景:成纤维细胞生长因子受体(FGFR)改变是发生在神经胶质瘤患者亚群中的潜在致癌驱动因素,但这些肿瘤的自然史尚未明确定义。了解FGFR驱动的胶质瘤的结果对FGFR抑制剂的靶向药物开发具有重要意义,FGFR抑制剂已被批准用于其他癌症。方法:我们对2003年至2023年在马萨诸塞州总医院发现的FGFR改变的胶质瘤患者进行了回顾性队列研究,包括融合、单核苷酸变异(SNV)和拷贝数变异(CNV)改变。搜索电子病历以确定额外的分子数据、治疗和MRI扫描。Kaplan-Meier分析用于评估无进展和总生存期(OS)。结果:31例胶质母细胞瘤(GBM)、弥漫性星形细胞瘤和胶质神经元肿瘤伴FGFR改变:17例伴FGFR融合,10例伴SNV, 4例伴CNV。FGFR3-TACC3融合在GBM或弥漫性星形细胞瘤患者中最常见。尽管55%的肿瘤具有未甲基化的MGMT启动子,但GBM患者的中位生存期为2.75年。没有明显的与FGFR改变同时发生的突变。在接受后续手术的7名患者中,6名患者失去了原有的FGFR改变。没有患者接受FGFR抑制剂治疗。结论:虽然FGFR改变在胶质瘤中很少见,但FGFR改变的GBM患者可能会延长生存期,这对临床试验设计具有重要意义。我们发现FGFR改变在随后的手术中消失,这引起了人们对FGFR靶向药物治疗复发性胶质瘤潜力的关注。
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引用次数: 0
Nutritional strategies in the management of diffuse gliomas: A systematic review. 弥漫性胶质瘤治疗中的营养策略:系统综述。
IF 2.5 Q2 CLINICAL NEUROLOGY Pub Date : 2025-05-08 eCollection Date: 2025-10-01 DOI: 10.1093/nop/npaf049
David Gritsch, Clara Baselga-Garriga, L Nicolas Gonzalez Castro

Background: Infiltrating gliomas are progressive brain tumors with an invariably fatal prognosis. Nutritional interventions, such as the ketogenic diet (KD) and caloric restriction, have been explored as adjunct therapies. This systematic review assesses the evidence for the efficacy and safety of these dietary strategies in the management of diffuse gliomas.

Methods: A systematic search was conducted in PubMed, covering studies up to February 23, 2024. Inclusion criteria were English-language clinical and observational studies that examined the impact of dietary interventions on diffuse glioma outcomes. Studies were evaluated for risk of bias using the Cochrane Risk of Bias 2 (RoB 2) tool and synthesized descriptively due to the heterogeneity of study designs and outcomes.

Results: Eighteen studies (2 randomized clinical trials [RCTs] and 16 observational studies) met the inclusion criteria. The RCTs, classified as high-quality evidence, did not demonstrate significant survival benefits from dietary interventions. Observational studies, while supporting the feasibility and safety of these interventions, provided inconsistent evidence regarding their efficacy in improving overall survival (OS) or progression-free survival (PFS). Methodological limitations, including small sample sizes, variability in dietary adherence, and patient heterogeneity, were common across studies.

Discussion: The evidence suggests that while dietary interventions like KD and caloric restriction are generally safe and feasible for diffuse glioma patients, their efficacy in improving survival outcomes remains inconclusive. Limitations such as small sample sizes and variability in adherence underscore the need for larger, well-designed trials to evaluate the clinical benefits of these interventions.

背景:浸润性胶质瘤是一种进行性脑肿瘤,预后总是致命的。营养干预,如生酮饮食(KD)和热量限制,已被探索作为辅助治疗。本系统综述评估了这些饮食策略在弥漫性胶质瘤治疗中的有效性和安全性的证据。方法:在PubMed中进行系统检索,涵盖截至2024年2月23日的研究。纳入标准是检查饮食干预对弥漫性胶质瘤结局影响的英文临床和观察性研究。使用Cochrane风险偏倚2 (RoB 2)工具评估研究的偏倚风险,并由于研究设计和结果的异质性进行描述性综合。结果:18项研究(2项随机临床试验[rct]和16项观察性研究)符合纳入标准。这些被归类为高质量证据的随机对照试验没有显示饮食干预对生存率有显著的益处。观察性研究虽然支持这些干预措施的可行性和安全性,但在改善总生存期(OS)或无进展生存期(PFS)的有效性方面提供了不一致的证据。方法上的局限性,包括样本量小、饮食依从性的可变性和患者的异质性,在所有研究中都很常见。讨论:有证据表明,虽然像KD和热量限制这样的饮食干预对弥漫性胶质瘤患者通常是安全可行的,但它们在改善生存结果方面的有效性仍不确定。样本量小和依从性的可变性等局限性强调了需要更大规模、设计良好的试验来评估这些干预措施的临床益处。
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引用次数: 0
Nationwide evaluation of readability, quality, and cultural sensitivity of online brain cancer education materials in the United States. 美国在线脑癌教育材料的可读性、质量和文化敏感性的全国性评估。
IF 2.5 Q2 CLINICAL NEUROLOGY Pub Date : 2025-05-04 eCollection Date: 2025-10-01 DOI: 10.1093/nop/npaf035
Joelle Nilak, Lauren Spadt, Adam L Cohen

Background: Patients with primary brain tumors navigate a devastating diagnosis and cognitive and physical decline. Available educational materials should be easily comprehensible, informative, reliable, culturally sensitive, and patient oriented.

Methods: We assessed websites of major brain tumor centers in the United States and patient organizations for readability using multiple calculators, quality and reliability using DISCERN and JAMA tools, and cultural sensitivity using the Cultural Sensitivity Assessment Tool scale. We determined whether sites addressed practical, emotional, social, and spiritual needs of a patient. Brain tumor centers were categorized based on NCI-designation and fulfillment of Guiding Principles developed by the American Brain Tumor Association.

Results: Websites of 91 brain tumor centers and 8 patient organizations were examined. Fewer than 10% of brain tumor centers' websites were readable at an eighth-grade level. There was no significant difference in readability between brain tumor centers and patient organizations. Patient organizations outperformed brain tumor centers on both quality measures, with no differences seen based on the category of centers. Only 48% of brain tumor centers and 63% of patient organizations scored at recommended levels on all cultural sensitivity scales. Most patient organizations, but few brain tumor centers, addressed practical, social, emotional, and spiritual needs.

Conclusions: Publicly available brain tumor education materials are frequently at a high reading level. Quality and cultural sensitivity can be improved by citing sources, describing treatment risks, describing outcomes without treatment, addressing quality of life during treatment, addressing myths, and visually representing more patients. Patient organizations can provide models for addressing patient needs.

背景:原发性脑肿瘤患者的诊断是毁灭性的,认知和身体衰退。可用的教育材料应易于理解、内容丰富、可靠、对文化敏感并以病人为导向。方法:我们使用多种计算器评估美国主要脑肿瘤中心和患者组织网站的可读性,使用DISCERN和JAMA工具评估网站的质量和可靠性,使用文化敏感性评估工具量表评估网站的文化敏感性。我们确定网站是否满足病人的实际、情感、社会和精神需求。脑肿瘤中心是根据nci的指定和美国脑肿瘤协会制定的指导原则进行分类的。结果:对91个脑肿瘤中心和8个患者组织的网站进行了检查。只有不到10%的脑肿瘤中心的网站能够达到八年级学生的阅读水平。脑肿瘤中心和患者组织在可读性上没有显著差异。患者组织在两项质量指标上都优于脑肿瘤中心,在中心类别上没有差异。只有48%的脑肿瘤中心和63%的患者组织在所有文化敏感性量表上得分达到建议水平。大多数患者组织,但很少有脑肿瘤中心,解决实际,社会,情感和精神需求。结论:公开的脑肿瘤教育资料往往是高阅读水平。质量和文化敏感性可以通过引用来源、描述治疗风险、描述不治疗的结果、处理治疗期间的生活质量、消除误解以及从视觉上代表更多患者来提高。患者组织可以提供满足患者需求的模型。
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引用次数: 0
The CARING intervention for neuro-oncology family caregivers: Randomized controlled trial feasibility, eSNAP/caregiver navigation engagement, and acceptability. 神经肿瘤家庭护理人员的护理干预:随机对照试验可行性,eSNAP/护理人员导航参与和可接受性。
IF 2.5 Q2 CLINICAL NEUROLOGY Pub Date : 2025-05-03 eCollection Date: 2025-10-01 DOI: 10.1093/nop/npaf048
Hyojin Choi, Steven K Sutton, Deanna Witte, Nina Pastore, Kristen J Wells, Bradley J Zebrack, Peter Forsyth, Margaret M Byrne, Maija Reblin

Background: To address the unmet support needs of neuro-oncology family caregivers, our team developed an 8-week intervention, CARING. CARING consists of electronic Social Network Assessment Program (eSNAP), a web-based tool to identify and organize support resources, and manualized navigation sessions for caregivers. Our objective is to evaluate the methodological feasibility of our randomized controlled trial (RCT) study design, and caregiver engagement and acceptability of CARING.

Methods: The RCT compared CARING to a waitlist control. RCT feasibility was evaluated based on caregiver and patient recruitment and retention. CARING intervention engagement was evaluated via caregiver participation data over 8 weeks. CARING intervention acceptability was evaluated via quantitative satisfaction scales, as well as qualitative debrief interviews of caregiver participants at 8 weeks.

Results: Of 502 potentially eligible patient-caregiver dyads approached, 148 consented (29%). Although effective, randomization was ended due to mid-study coronavirus disease (COVID)-related administrative issues that impacted recruitment rates. In the last year, all participants were assigned to the intervention condition to prioritize the evaluation of CARING. Of those enrolled, 87% of caregivers and 77% of patients completed the Week-8 assessment. Of the 81 caregivers assigned to CARING, 88% used eSNAP at least once, and 73% engaged with 6+ navigation topics. At 8 weeks, 77% of caregivers reported that they liked CARING and 81% found it helpful. Qualitative data provided additional insights into intervention acceptability.

Conclusions: Results suggest that the RCT methodology used is feasible, and neuro-oncology caregivers engaged with CARING components and found the intervention acceptable. Future studies can apply key lessons in developing or implementing other caregiver interventions.

背景:为了解决神经肿瘤家庭护理人员未满足的支持需求,我们的团队开发了一项为期8周的干预,CARING。care由电子社会网络评估程序(eSNAP)组成,这是一个基于网络的工具,用于识别和组织支持资源,以及为护理人员提供的手动导航会话。我们的目的是评估随机对照试验(RCT)研究设计的方法学可行性,以及护理人员参与和护理的可接受性。方法:RCT比较了care和等候名单对照。根据护理人员和患者的招募和保留来评估RCT的可行性。通过8周的护理人员参与数据来评估护理干预的参与程度。通过定量满意度量表评估护理干预的可接受性,并在8周时对护理者参与者进行定性汇报访谈。结果:在接触的502名可能符合条件的患者-护理人员中,148人同意(29%)。虽然有效,但由于研究中期与冠状病毒病(COVID)相关的行政问题影响了招募率,随机化被终止。在最后一年,所有的参与者被分配到干预条件,以优先评估关怀。在这些参与者中,87%的护理人员和77%的患者完成了第8周的评估。在81名护理人员中,88%的人至少使用过一次eSNAP, 73%的人参与了6个以上的导航主题。在8周时,77%的护理人员报告说他们喜欢关怀,81%的人认为它有帮助。定性数据为干预措施的可接受性提供了额外的见解。结论:结果表明所采用的RCT方法是可行的,神经肿瘤护理人员参与了care成分,并认为干预是可以接受的。未来的研究可以将关键经验应用于开发或实施其他护理干预措施。
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Neuro-oncology practice
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