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与假球麻痹情感负担共存:教育对患者体验影响的质性分析。

Living With the Burden of Pseudobulbar Affect: A Qualitative Analysis of the Effects of Education on Patient Experience.

作者信息

Turell Wendy, Roc Anne, Pioro Erik, Howson Alexandra

机构信息

CME Outcomes and Analytics, PlatformQ Health Education, Needham, MA, USA.

Medical Education and Strategy, PlatformQ Health Education, Needham, MA, USA.

出版信息

J Patient Exp. 2020 Dec;7(6):1324-1330. doi: 10.1177/2374373519899597. Epub 2020 Mar 2.

Abstract

Pseudobulbar affect (PBA) is associated with several neurological diseases and is underrecognized in clinical practice; however, PBA symptoms are often attributed to psychiatric or mood disorders rather than to neurological etiology. Until recently, there were no US Food and Drug Administration therapies approved for treating this condition, and there are currently few resources to support patients in the recognition and self-management of PBA symptoms. We evaluated the impact of a virtual education symposium on patient knowledge and self-efficacy via qualitative interviews. This evaluation of education impact provides unique insight into the experience of managing PBA symptoms; suggests that there is extensive need for educational resources to support patients with PBA and enable them to engage effectively with their providers; and affirms that online learning is an effective mechanism for delivering education to patients that enables them to more effectively self-manage symptoms in the context of chronic neurological conditions such as PBA.

摘要

假性球麻痹(PBA)与多种神经系统疾病相关,在临床实践中未得到充分认识;然而,PBA症状通常归因于精神或情绪障碍,而非神经病因。直到最近,美国食品药品监督管理局仍未批准用于治疗这种疾病的疗法,目前也几乎没有资源支持患者认识和自我管理PBA症状。我们通过定性访谈评估了虚拟教育研讨会对患者知识和自我效能的影响。这种对教育影响的评估为管理PBA症状的经验提供了独特见解;表明迫切需要教育资源来支持PBA患者,并使他们能够与医疗服务提供者有效互动;并确认在线学习是向患者提供教育的有效机制,使他们能够在诸如PBA等慢性神经系统疾病的背景下更有效地自我管理症状。

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本文引用的文献

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Association of Pseudobulbar Affect symptoms with quality of life and healthcare costs in Veterans with traumatic brain injury.
J Affect Disord. 2016 Jan 15;190:150-155. doi: 10.1016/j.jad.2015.10.003. Epub 2015 Oct 23.
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Pseudobulbar affect: prevalence and management.假性球麻痹:患病率与管理
Ther Clin Risk Manag. 2013;9:483-9. doi: 10.2147/TCRM.S53906. Epub 2013 Nov 29.
5
Pseudobulbar affect: burden of illness in the USA.假性延髓情绪障碍:美国的疾病负担。
Adv Ther. 2012 Sep;29(9):775-98. doi: 10.1007/s12325-012-0043-7. Epub 2012 Aug 30.

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