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本文引用的文献

1
Education on palliative care for Parkinson patients: development of the "Best care for people with late-stage Parkinson's disease" curriculum toolkit.帕金森病患者姑息治疗教育:“为晚期帕金森病患者提供最佳护理”课程工具包的制定。
BMC Med Educ. 2021 Oct 25;21(1):538. doi: 10.1186/s12909-021-02964-6.
2
Access and Attitudes Toward Palliative Care Among Movement Disorders Clinicians.运动障碍临床医生对姑息治疗的认知与态度
Mov Disord. 2022 Jan;37(1):182-189. doi: 10.1002/mds.28773. Epub 2021 Aug 25.
3
From European Association for Palliative Care Recommendations to a Blended, Standardized, Free-to-Access Undergraduate Curriculum in Palliative Medicine: The EDUPALL Project.从欧洲姑息治疗协会的建议到混合式、标准化、免费的姑息医学本科课程:EDUPALL 项目。
J Palliat Med. 2020 Dec;23(12):1571-1585. doi: 10.1089/jpm.2020.0119. Epub 2020 Jul 21.
4
Incoming ethical issues for deep brain stimulation: when long-term treatment leads to a 'new form of the disease'.深部脑刺激的传入伦理问题:当长期治疗导致“疾病的新形式”时。
J Med Ethics. 2021 Jan;47(1):20-25. doi: 10.1136/medethics-2019-106052. Epub 2020 May 14.
5
Consensus-Based Recommendations for Advance Directives of People with Parkinson's Disease in Regard to Typical Complications by German Movement Disorder Specialists.德国运动障碍专家关于帕金森病患者针对典型并发症的预先指示的基于共识的建议。
J Clin Med. 2020 Feb 6;9(2):449. doi: 10.3390/jcm9020449.
6
Comparison of Integrated Outpatient Palliative Care With Standard Care in Patients With Parkinson Disease and Related Disorders: A Randomized Clinical Trial.比较综合门诊姑息治疗与标准治疗对帕金森病及相关疾病患者的效果:一项随机临床试验。
JAMA Neurol. 2020 May 1;77(5):551-560. doi: 10.1001/jamaneurol.2019.4992.
7
Palliative care and Parkinson's disease: outpatient needs and models of care over the disease trajectory.姑息治疗与帕金森病:疾病进程中的门诊需求及照护模式
Ann Palliat Med. 2020 Feb;9(Suppl 1):S44-S51. doi: 10.21037/apm.2019.11.11. Epub 2019 Dec 13.
8
Advance care planning in Parkinson's disease: ethical challenges and future directions.帕金森病的预先护理计划:伦理挑战与未来方向。
NPJ Parkinsons Dis. 2019 Nov 22;5:24. doi: 10.1038/s41531-019-0098-0. eCollection 2019.
9
Palliative care in Parkinson's disease: review of needs assessment tools.帕金森病的姑息治疗:需求评估工具综述
Ann Palliat Med. 2020 Feb;9(Suppl 1):S6-S15. doi: 10.21037/apm.2019.09.18. Epub 2019 Oct 28.
10
Advance Directives of German People with Parkinson's Disease Are Unspecific in regard to Typical Complications.德国帕金森病患者的预先医疗指示在典型并发症方面缺乏特异性。
Parkinsons Dis. 2019 Aug 4;2019:2107821. doi: 10.1155/2019/2107821. eCollection 2019.

帕金森病门诊预立医疗指示创建咨询分析:基于问卷调查的德国全科医生和神经科医生横断面调查

Analysis of Parkinson's Disease Outpatient Counselling for Advance Directive Creation: A Cross-Sectional Questionnaire-Based Survey of German General Practitioners and Neurologists.

作者信息

Jensen Ida, Bretschneider Almut, Stiel Stephanie, Wegner Florian, Höglinger Günter U, Klietz Martin

机构信息

Department of Neurology, Hannover Medical School, 30625 Hannover, Germany.

Institute for General Practice and Palliative Care, Hannover Medical School, 30625 Hannover, Germany.

出版信息

Brain Sci. 2022 Jun 7;12(6):749. doi: 10.3390/brainsci12060749.

DOI:10.3390/brainsci12060749
PMID:35741634
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC9221250/
Abstract

A major proportion of people with Parkinson's disease (PwP) in Germany has written an advance directive (AD). Unfortunately, these ADs are unclear for PD-specific endpoints. We previously established consensus-based recommendations for disease-specific content of an AD in PwP. However, the implementation of those recommendations and the consulting of AD creation and modification in PwP remains to be evaluated. This study aimed to investigate the practical use of PD-specific recommendations for ADs in outpatient settings. A total of 87 physicians (45 general practitioners (GPs) and 42 neurologists, 10% response rate) answered a self-constructed semiquantitative questionnaire. The participants were asked to evaluate the suggested PD-specific recommendations for ADs and the supply of palliative care in the outpatient setting. Overall, the vast majority of treating physicians agreed on the usefulness of the newly constructed PD-specific recommendations. Consultations to discuss information about PD-specific ADs were scarce with short durations. Only 24% of participating physicians implemented the PD-specific recommendations in their daily practice. GPs and neurologists agreed on the benefit of disease-specific recommendations for ADs. In future, a more general integration of these recommendations in routine care might improve specific AD creation of PwP and advanced care planning.

摘要

德国大部分帕金森病患者(PwP)都写了预先指示(AD)。不幸的是,这些预先指示对于帕金森病特定的终点并不明确。我们之前为帕金森病患者预先指示的疾病特定内容制定了基于共识的建议。然而,这些建议的实施情况以及帕金森病患者预先指示创建和修改的咨询情况仍有待评估。本研究旨在调查帕金森病特定预先指示建议在门诊环境中的实际应用。共有87名医生(45名全科医生(GP)和42名神经科医生,回复率为10%)回答了一份自行编制的半定量问卷。参与者被要求评估建议的帕金森病特定预先指示建议以及门诊姑息治疗的提供情况。总体而言,绝大多数治疗医生都认同新制定的帕金森病特定建议的有用性。关于讨论帕金森病特定预先指示信息的咨询很少,且持续时间短。只有24%的参与医生在日常实践中实施了帕金森病特定建议。全科医生和神经科医生都认同针对预先指示的疾病特定建议的益处。未来,将这些建议更广泛地纳入常规护理可能会改善帕金森病患者特定预先指示的创建和高级护理规划。