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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

(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 o...

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Autores principales: Breel, Jennifer S., de Klerk, Eline S., Strypet, Magnus, de Heer, Frederiek, Hermanns, Henning, Hollmann, Markus W., Eberl, Susanne
Formato: Online Artículo Texto
Lenguaje:English
Publicado: MDPI 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10607692/
https://www.ncbi.nlm.nih.gov/pubmed/37892723
http://dx.doi.org/10.3390/jcm12206584
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author Breel, Jennifer S.
de Klerk, Eline S.
Strypet, Magnus
de Heer, Frederiek
Hermanns, Henning
Hollmann, Markus W.
Eberl, Susanne
author_facet Breel, Jennifer S.
de Klerk, Eline S.
Strypet, Magnus
de Heer, Frederiek
Hermanns, Henning
Hollmann, Markus W.
Eberl, Susanne
author_sort Breel, Jennifer S.
collection PubMed
description (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.
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spelling pubmed-106076922023-10-28 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 Breel, Jennifer S. de Klerk, Eline S. Strypet, Magnus de Heer, Frederiek Hermanns, Henning Hollmann, Markus W. Eberl, Susanne J Clin Med Article (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. MDPI 2023-10-18 /pmc/articles/PMC10607692/ /pubmed/37892723 http://dx.doi.org/10.3390/jcm12206584 Text en © 2023 by the authors. https://creativecommons.org/licenses/by/4.0/Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https://creativecommons.org/licenses/by/4.0/).
spellingShingle Article
Breel, Jennifer S.
de Klerk, Eline S.
Strypet, Magnus
de Heer, Frederiek
Hermanns, Henning
Hollmann, Markus W.
Eberl, Susanne
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
title 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
title_full 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
title_fullStr 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
title_full_unstemmed 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
title_short 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
title_sort 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
topic Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10607692/
https://www.ncbi.nlm.nih.gov/pubmed/37892723
http://dx.doi.org/10.3390/jcm12206584
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