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神经退行性疾病患者的支持性护理。

Supportive care of neurodegenerative patients.

作者信息

Armitage A E, Fonkem E

机构信息

Department of Supportive Palliative Care, Baylor Scott and White Health, Temple, TX, United States.

Department of Neurosurgery, Baylor Scott and White Health, Temple, TX, United States.

出版信息

Front Oncol. 2023 Feb 14;13:1029938. doi: 10.3389/fonc.2023.1029938. eCollection 2023.

DOI:10.3389/fonc.2023.1029938
PMID:36865803
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC9974138/
Abstract

Neurodegenerative illnesses are notorious for paucity of treatments and relentless clinical progression. Illness may follow a relatively acute presentation, as is seen with primary brain tumors such as glioblastoma or have a more insidious onset with a slower yet unyielding course, such as that seen in Parkinson's disease. Though disparate in presentation, these neurodegenerative illnesses are universally terminal, and both the patients and their families benefit from the intervention of supportive care in conjunction with primary disease management. Supportive palliative care has been shown to improve quality of life, enhance patient outcomes, and often extend patient life-but such care needs to be tailored. This clinical commentary examines the role of supportive palliative care in the management of neurologic patients, comparing and contrasting glioblastoma patients with idiopathic Parkinson's disease patients. Both patient populations are high utilizers of healthcare resources, require active management of multiple symptoms, and have high caregiver burden which underscores the need for supportive services in conjunction with disease management provided by the primary care team. Review of prognostication, patient and family communication, trust and relationship building, and complementary medicinal approaches are explored for these two diseases which broadly represent two differing poles of incurable neurological illness.

摘要

神经退行性疾病因治疗方法匮乏和临床进展无情而声名狼藉。疾病可能呈现相对急性的症状,如胶质母细胞瘤等原发性脑肿瘤;或者起病更为隐匿,病程缓慢但持续发展,如帕金森病。尽管临床表现各异,但这些神经退行性疾病都是致命的,患者及其家属都能从支持性护理与原发性疾病管理相结合的干预措施中受益。支持性姑息治疗已被证明可以提高生活质量、改善患者预后,并且常常能延长患者生命——但这种护理需要量身定制。这篇临床评论探讨了支持性姑息治疗在神经科患者管理中的作用,对比了胶质母细胞瘤患者和特发性帕金森病患者。这两类患者群体都是医疗资源的高消耗者,需要积极处理多种症状,并且照顾者负担沉重,这凸显了在初级护理团队提供的疾病管理基础上,还需要支持性服务。本文针对这两种疾病,探讨了预后判断、患者及家属沟通、信任与关系建立以及补充医学方法,这两种疾病大致代表了不可治愈的神经系统疾病的两个不同极端。

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本文引用的文献

1
Diagnosis and Medical Management of Parkinson Disease.帕金森病的诊断和医学管理。
Continuum (Minneap Minn). 2022 Oct 1;28(5):1281-1300. doi: 10.1212/CON.0000000000001152.
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