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“生活……变得天翻地覆……”改善高级别胶质瘤姑息治疗的机会。

"Life…Gets Turned Upside-Down…" Opportunities to Improve Palliative Care for High-Grade Glioma.

机构信息

Department of Neurology, Icahn School of Medicine at Mount Sinai, (R.C.C, B.G.V), New York, New York, USA; Brookdale Department of Geriatrics and Palliative Medicine, (R.C.C), Icahn School of Medicine at Mount Sinai, New York, New York, USA.

Graduate School of Biomedical Sciences, (J.F.N), Icahn School of Medicine at Mount Sinai, New York, New York, USA.

出版信息

J Pain Symptom Manage. 2024 Sep;68(3):272-281.e2. doi: 10.1016/j.jpainsymman.2024.06.001. Epub 2024 Jun 10.

DOI:10.1016/j.jpainsymman.2024.06.001
PMID:38866115
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC11391587/
Abstract

CONTEXT

Early palliative care referral is recommended broadly in oncology. Yet, few patients with high-grade gliomas (HGG) - highly aggressive brain tumors - receive specialty palliative care consultation.

OBJECTIVES

To delineate unique needs of HGG patients relative to other oncology patients according to perceptions of a diverse sample of US palliative medicine physicians and neuro-oncologists in each of the eight domains of palliative care; and to describe contrasts between physician specialties on indications for and timing of specialty palliative care referrals in HGG.

METHODS

Between September 2021 and May 2023, we conducted semi-structured, 40-minute interviews with ten palliative medicine physicians and ten neuro-oncologists. Participants were recruited via purposive sampling for diversity in geographic setting, years in practice, and practice structure. Interviews were audio-recorded, professionally transcribed, and coded by two investigators. Data were analyzed thematically using a qualitative, phenomenological approach.

RESULTS

The palliative care needs of HGG relative to other cancers across palliative care domains are distinguished by poor prognosis, physical and cognitive deficits, and neuropsychiatric symptoms. Themes on indications for palliative care referral differed between neuro-oncologists and palliative physicians. Neuro-oncologists favored selective referral for clinical indications such as high non-neurologic symptom burden requiring time-intensive management. Palliative physicians favored early referral of most HGG patients, to allow for maximal benefit across HGG trajectory.

CONCLUSION

Patients with HGG have unique palliative care needs that affect palliative care delivery across care domains. Bidirectional education, enhanced collaboration, and consensus guidelines may help overcome barriers to specialty palliative care referral.

摘要

背景

早期姑息治疗推荐在肿瘤学中广泛应用。然而,很少有高级别神经胶质瘤(HGG)——高度侵袭性脑肿瘤——患者接受专业姑息治疗咨询。

目的

根据美国姑息医学医师和神经肿瘤学家对姑息治疗的八个领域中每一个领域的不同看法,描绘 HGG 患者相对于其他肿瘤患者的独特需求;并描述在 HGG 中,专科姑息治疗转诊的指征和时机方面,医师专业之间的差异。

方法

在 2021 年 9 月至 2023 年 5 月期间,我们对 10 名姑息医学医师和 10 名神经肿瘤学家进行了半结构式、40 分钟的访谈。参与者通过有目的的抽样,在地理环境、从业年限和执业结构方面具有多样性。访谈采用专业转录和由两名调查员进行编码的录音进行记录。使用定性、现象学方法对数据进行主题分析。

结果

HGG 相对于其他癌症在姑息治疗领域的需求特点是预后不良、身体和认知缺陷以及神经精神症状。关于姑息治疗转诊指征的主题在神经肿瘤学家和姑息治疗医师之间存在差异。神经肿瘤学家倾向于根据临床指征选择性转诊,例如需要密集管理的非神经症状负担高。姑息治疗医师倾向于对大多数 HGG 患者进行早期转诊,以在 HGG 病程中获得最大获益。

结论

HGG 患者有独特的姑息治疗需求,影响了姑息治疗在各个治疗领域的实施。双向教育、增强协作和共识指南可能有助于克服专业姑息治疗转诊的障碍。

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本文引用的文献

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Clinician perspectives on integrating neuro-oncology and palliative care for patients with high-grade glioma.临床医生对为高级别胶质瘤患者整合神经肿瘤学与姑息治疗的观点。
Neurooncol Pract. 2024 Mar 14;11(4):404-412. doi: 10.1093/nop/npae022. eCollection 2024 Aug.
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What do carers of people with high-grade glioma perceive could improve their preparedness to care, and what additional support do they require?高级别胶质瘤患者的护理人员认为哪些方面可以提高他们的护理准备程度,他们还需要哪些额外的支持?
Neurooncol Pract. 2024 Feb 16;11(3):296-306. doi: 10.1093/nop/npae015. eCollection 2024 Jun.
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Common Data Elements for Disorders of Consciousness: Recommendations from the Working Group on Goals-of-Care and Family/Surrogate Decision-Maker Data.意识障碍的常用数据元素:关注目标和家庭/代理决策者数据工作组的建议。
Neurocrit Care. 2023 Dec;39(3):600-610. doi: 10.1007/s12028-023-01796-0. Epub 2023 Sep 13.
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Palliative care referral across the disease trajectory in high-grade glioma.在高级别胶质瘤的疾病进程中进行姑息治疗转诊。
J Neurooncol. 2023 May;163(1):249-259. doi: 10.1007/s11060-023-04338-y. Epub 2023 May 20.
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CBTRUS Statistical Report: Primary Brain and Other Central Nervous System Tumors Diagnosed in the United States in 2015-2019.美国 2015-2019 年确诊的原发性脑和其他中枢神经系统肿瘤 CBTRUS 统计报告。
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Embedding palliative care in a neuro-oncology clinic at an academic medical center: Our structure, experience, and lessons learned.在一所学术医疗中心的神经肿瘤诊所中融入姑息治疗:我们的架构、经验及经验教训。
Neurooncol Adv. 2022 Jul 11;4(1):vdac114. doi: 10.1093/noajnl/vdac114. eCollection 2022 Jan-Dec.
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Trends and outcomes of early and late palliative care consultation for adult patients with glioblastoma: A SEER-Medicare retrospective study.胶质母细胞瘤成年患者早期和晚期姑息治疗会诊的趋势与结果:一项监测、流行病学和最终结果(SEER)-医疗保险回顾性研究
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