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急性A型主动脉夹层幸存者真正关心的问题——荷兰全国主动脉夹层宣传组织的患者报告结局调查

What Really Matters to Survivors of Acute Type A Aortic Dissection-A Survey of Patient-Reported Outcomes in the Dutch National Aortic Dissection Advocacy Group.

作者信息

Breel Jennifer S, de Klerk Eline S, Strypet Magnus, de Heer Frederiek, Hermanns Henning, Hollmann Markus W, Eberl Susanne

机构信息

Department of Anesthesiology, Amsterdam University Medical Centers, Location Meibergdreef, 1105 AZ Amsterdam, The Netherlands.

Department of Cardiac Surgery, Amsterdam University Medical Centers, Location Meibergdreef, 1105 AZ Amsterdam, The Netherlands.

出版信息

J Clin Med. 2023 Oct 18;12(20):6584. doi: 10.3390/jcm12206584.

Abstract

(1) Background: Type A acute aortic dissection (TAAAD) almost always requires emergency surgery, and postoperative complications are common. Quality assurance systems tend to measure only the hard outcomes, e.g., complications and mortality. Our aim was to assess the health-related quality of life of TAAAD survivors. (2) Methods: An anonymized, Dutch language, web-based survey was sent out to all of the participants of the 2022 Annual Meeting of the Dutch National Aortic Dissection (DNAD) advocacy group via their own representatives. The survey was divided into five sections: patient information, global satisfaction, surgery, including complications, and the recovery period. (3) Results: Ninety members of the DNAD group attended the meeting. Seventy-five (83%) participated in the survey, and the responses from 61 (81%) were available for analysis. Despite hindrances in their daily life (complications, changes in physical, cognitive, and social functioning), patients were satisfied with their treatment, and all would undergo the procedure again. In addition they requested better post-discharge guidance and communication (4) Conclusion: The emphasis lies in equipping patients with knowledge about potential outcomes and effective coping strategies. This underscores the importance of communication and expectation management, in line with established literature.

摘要

(1) 背景:A型急性主动脉夹层(TAAAD)几乎总是需要紧急手术,且术后并发症很常见。质量保证体系往往只衡量硬性结果,如并发症和死亡率。我们的目的是评估TAAAD幸存者的健康相关生活质量。(2) 方法:通过荷兰国家主动脉夹层(DNAD)倡导组织2022年年会的所有参与者各自的代表,发送了一份匿名的、基于网络的荷兰语调查问卷。该问卷分为五个部分:患者信息、总体满意度、手术(包括并发症)以及恢复期。(3) 结果:DNAD组织的90名成员参加了会议。75人(83%)参与了调查,其中61人的回复(81%)可供分析。尽管患者日常生活中存在诸多不便(并发症、身体、认知和社交功能的变化),但他们对治疗感到满意,并且所有人都愿意再次接受该手术。此外,他们要求提供更好的出院后指导和沟通。(4) 结论:重点在于让患者了解潜在结果和有效的应对策略。这凸显了沟通和期望管理的重要性,与现有文献一致。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/35b6/10607692/c2d27e2b545e/jcm-12-06584-g001.jpg

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