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公布运动神经元病的诊断消息:一项关于神经科医生观点的全国性调查。

Breaking the news of a diagnosis of motor neurone disease: A national survey of neurologists' perspectives.

作者信息

Aoun Samar M, Breen Lauren J, Edis Robert, Henderson Robert D, Oliver David, Harris Rodney, Howting Denise, O'Connor Margaret, Birks Carol

机构信息

School of Nursing, Midwifery and Paramedicine, Faculty of Health Sciences, Curtin University, GPO Box U1987, Perth, WA 6845, Australia.

School of Psychology and Speech Pathology, Faculty of Health Sciences, Curtin University, GPO Box U1987, Perth, WA 6845, Australia.

出版信息

J Neurol Sci. 2016 Aug 15;367:368-74. doi: 10.1016/j.jns.2016.06.033. Epub 2016 Jun 16.

Abstract

Communication of the diagnosis of MND is daunting for patients and neurologists. This study aimed to establish a knowledge base of current Australian practice of breaking the news of an MND diagnosis, to assess the neurologists' educational and training needs and to compare the feedback obtained from neurologists and patients to international practice guidelines. An anonymous survey of neurologists was undertaken in Australia (2014). 73 neurologists responded to this national survey (50.4% response rate). Nearly 70% of neurologists reported finding it "somewhat to very difficult" communicating the MND diagnosis, and 65% reported feeling moderate to high stress and anxiety at the delivery of diagnosis. Compared to international guidelines, areas for improvement include length of consultation, period of follow up and referral to MND associations. Two-thirds of neurologists were interested in further training to respond to patient's emotions and development of best practice guidelines. This is the first national study to provide a comprehensive insight into the process of delivering the MND diagnosis from the neurologists' perspective and to make comparisons with those of patients and the international guidelines. This study forms the basis for developing protocols to improve communication skills and alleviate the emotional burden associated with breaking bad news.

摘要

向患者和神经科医生传达运动神经元病(MND)的诊断结果是一项艰巨的任务。本研究旨在建立澳大利亚当前告知MND诊断消息的实践知识库,评估神经科医生的教育和培训需求,并将从神经科医生和患者那里获得的反馈与国际实践指南进行比较。2014年在澳大利亚对神经科医生进行了一项匿名调查。73名神经科医生回应了这项全国性调查(回应率为50.4%)。近70%的神经科医生报告称传达MND诊断结果“有点难到非常难”,65%的人报告在告知诊断时感到中度到高度的压力和焦虑。与国际指南相比,需要改进的方面包括会诊时长、随访期以及转介至MND协会。三分之二的神经科医生有兴趣接受进一步培训,以应对患者的情绪并制定最佳实践指南。这是第一项从神经科医生的角度全面深入了解传达MND诊断过程并与患者及国际指南进行比较的全国性研究。本研究为制定提高沟通技巧和减轻传达坏消息相关情感负担的方案奠定了基础。

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