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

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.