{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,26]],"date-time":"2026-09-26T01:39:42Z","timestamp":1790386782055,"version":"4.1.0"},"reference-count":30,"publisher":"MDPI AG","issue":"20","license":[{"start":{"date-parts":[[2023,10,18]],"date-time":"2023-10-18T00:00:00Z","timestamp":1697587200000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["JCM"],"abstract":"<jats:p>(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.<\/jats:p>","DOI":"10.3390\/jcm12206584","type":"journal-article","created":{"date-parts":[[2023,10,18]],"date-time":"2023-10-18T10:36:56Z","timestamp":1697625416000},"page":"6584","update-policy":"https:\/\/doi.org\/10.3390\/mdpi_crossmark_policy","source":"Crossref","is-referenced-by-count":14,"title":["What Really Matters to Survivors of Acute Type A Aortic Dissection\u2014A Survey of Patient-Reported Outcomes in the Dutch National Aortic Dissection Advocacy Group"],"prefix":"10.3390","volume":"12","author":[{"given":"Jennifer S.","family":"Breel","sequence":"first","affiliation":[{"name":"Department of Anesthesiology, Amsterdam University Medical Centers, Location Meibergdreef, 1105 AZ Amsterdam, The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-9322-4577","authenticated-orcid":false,"given":"Eline S.","family":"de Klerk","sequence":"additional","affiliation":[{"name":"Department of Anesthesiology, Amsterdam University Medical Centers, Location Meibergdreef, 1105 AZ Amsterdam, The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Magnus","family":"Strypet","sequence":"additional","affiliation":[{"name":"Department of Anesthesiology, Amsterdam University Medical Centers, Location Meibergdreef, 1105 AZ Amsterdam, The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Frederiek","family":"de Heer","sequence":"additional","affiliation":[{"name":"Department of Cardiac Surgery, Amsterdam University Medical Centers, Location Meibergdreef, 1105 AZ Amsterdam, The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-4297-495X","authenticated-orcid":false,"given":"Henning","family":"Hermanns","sequence":"additional","affiliation":[{"name":"Department of Anesthesiology, Amsterdam University Medical Centers, Location Meibergdreef, 1105 AZ Amsterdam, The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8248-0244","authenticated-orcid":false,"given":"Markus W.","family":"Hollmann","sequence":"additional","affiliation":[{"name":"Department of Anesthesiology, Amsterdam University Medical Centers, Location Meibergdreef, 1105 AZ Amsterdam, The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6609-5888","authenticated-orcid":false,"given":"Susanne","family":"Eberl","sequence":"additional","affiliation":[{"name":"Department of Anesthesiology, Amsterdam University Medical Centers, Location Meibergdreef, 1105 AZ Amsterdam, The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"1968","published-online":{"date-parts":[[2023,10,18]]},"reference":[{"key":"ref_1","doi-asserted-by":"crossref","first-page":"2873","DOI":"10.1093\/eurheartj\/ehu281","article-title":"ESC Committee for Practice Guidelines. 2014 ESC Guidelines on the diagnosis and treatment of aortic diseases: Document covering acute and chronic aortic diseases of the thoracic and abdominal aorta of the adult. The Task Force for the Diagnosis and Treatment of Aortic Diseases of the European Society of Cardiology (ESC)","volume":"35","author":"Erbel","year":"2014","journal-title":"Eur. Heart J."},{"key":"ref_2","doi-asserted-by":"crossref","unstructured":"Perone, F., Guglielmo, M., Coceani, M., La Mura, L., Dentamaro, I., Sabatino, J., and Gimelli, A. (2023). The Role of Multimodality Imaging Approach in Acute Aortic Syndromes: Diagnosis, Complications, and Clinical Management. Diagnostics, 13.","DOI":"10.3390\/diagnostics13040650"},{"key":"ref_3","doi-asserted-by":"crossref","first-page":"118","DOI":"10.1186\/s13019-022-01875-x","article-title":"Quality of life following surgical repair of acute type A aortic dissection: A systematic review","volume":"17","author":"Eranki","year":"2022","journal-title":"J. Cardiothorac. Surg."},{"key":"ref_4","doi-asserted-by":"crossref","first-page":"592","DOI":"10.1186\/s13063-018-2978-8","article-title":"Outcomes, Interventions and Funding in Randomised Research Published in High-Impact Journals","volume":"19","author":"Grey","year":"2018","journal-title":"Trials"},{"key":"ref_5","doi-asserted-by":"crossref","first-page":"23","DOI":"10.1051\/ject\/201446023","article-title":"Meaningful outcome measures in cardiac surgery","volume":"46","author":"Myles","year":"2014","journal-title":"J. Extra Corpor. Technol."},{"key":"ref_6","first-page":"61","article-title":"Patient-Reported Outcomes (PROs) and Patient-Reported Outcome Measures (PROMs)","volume":"6","author":"Weldring","year":"2013","journal-title":"Health Serv. Insights"},{"key":"ref_7","doi-asserted-by":"crossref","first-page":"294","DOI":"10.1016\/j.athoracsur.2018.06.005","article-title":"Patient-Reported Outcomes in Cardiothoracic Surgery","volume":"107","author":"Subramanian","year":"2019","journal-title":"Ann. Thorac. Surg."},{"key":"ref_8","doi-asserted-by":"crossref","first-page":"1340","DOI":"10.1016\/j.cjca.2021.04.006","article-title":"Patient-Reported Outcomes in Cardiovascular Trials","volume":"37","author":"Spadaccio","year":"2021","journal-title":"Can. J. Cardiol."},{"key":"ref_9","doi-asserted-by":"crossref","first-page":"127","DOI":"10.1007\/s40258-017-0310-5","article-title":"EQ-5D and the EuroQol Group: Past, Present and Future","volume":"15","author":"Devlin","year":"2017","journal-title":"Appl. Health Econ. Health Policy"},{"key":"ref_10","doi-asserted-by":"crossref","first-page":"473","DOI":"10.1097\/00005650-199206000-00002","article-title":"The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection","volume":"30","author":"Ware","year":"1992","journal-title":"Med. Care"},{"key":"ref_11","doi-asserted-by":"crossref","first-page":"14","DOI":"10.1177\/135581969700200105","article-title":"Development and testing of the UK SF-12 (short form health survey)","volume":"2","author":"Jenkinson","year":"1997","journal-title":"J. Health Serv. Res. Policy"},{"key":"ref_12","doi-asserted-by":"crossref","first-page":"815","DOI":"10.2471\/BLT.09.067231","article-title":"Developing the World Health Organization Disability Assessment Schedule 2.0","volume":"88","author":"Chatterji","year":"2010","journal-title":"Bull. World Health Organ."},{"key":"ref_13","doi-asserted-by":"crossref","first-page":"361","DOI":"10.1111\/j.1600-0447.1983.tb09716.x","article-title":"The hospital anxiety and depression scale","volume":"67","author":"Zigmond","year":"1983","journal-title":"Acta Psychiatr. Scand."},{"key":"ref_14","doi-asserted-by":"crossref","first-page":"1179","DOI":"10.1016\/j.jclinepi.2010.04.011","article-title":"The Patient-Reported Outcomes Measurement Information System (PROMIS) developed and tested its first wave of adult self-reported health outcome item banks: 2005\u20132008","volume":"63","author":"Cella","year":"2010","journal-title":"J. Clin. Epidemiol."},{"key":"ref_15","doi-asserted-by":"crossref","first-page":"3179","DOI":"10.1007\/s11606-021-06737-1","article-title":"A Consensus-Based Checklist for Reporting of Survey Studies (CROSS)","volume":"36","author":"Sharma","year":"2021","journal-title":"J. Gen. Intern. Med."},{"key":"ref_16","doi-asserted-by":"crossref","first-page":"e007224","DOI":"10.1136\/bmjopen-2014-007224","article-title":"Surgical complications and their impact on patients\u2019 psychosocial well-being: A systematic review and meta-analysis","volume":"6","author":"Pinto","year":"2016","journal-title":"BMJ Open"},{"key":"ref_17","doi-asserted-by":"crossref","first-page":"70","DOI":"10.1007\/s12471-012-0347-x","article-title":"Cognitive dysfunction after cardiac surgery: Pathophysiological mechanisms and preventive strategies","volume":"21","author":"Bruggemans","year":"2013","journal-title":"Neth. Heart J."},{"key":"ref_18","doi-asserted-by":"crossref","first-page":"844","DOI":"10.2459\/JCM.0000000000000133","article-title":"Mind injuries after cardiac surgery","volume":"16","author":"Rovai","year":"2015","journal-title":"J. Cardiovasc. Med."},{"key":"ref_19","doi-asserted-by":"crossref","first-page":"309","DOI":"10.1016\/j.hrtlng.2020.01.001","article-title":"Sex differences in factors associated with post-traumatic stress disorder in acute type A aortic dissection patients","volume":"49","author":"Chen","year":"2020","journal-title":"Heart Lung"},{"key":"ref_20","doi-asserted-by":"crossref","first-page":"37","DOI":"10.1007\/s11748-017-0830-9","article-title":"Measuring what matters to the patient: Health related quality of life after aortic valve and thoracic aortic surgery","volume":"67","author":"Kluin","year":"2019","journal-title":"Gen. Thorac. Cardiovasc. Surg."},{"key":"ref_21","doi-asserted-by":"crossref","first-page":"343","DOI":"10.1016\/j.ejvs.2023.06.032","article-title":"Patient Reported Outcome Measures Used to Assess Quality of Life in Aortic Dissection: A Systematic Scoping Review using COSMIN Methodology","volume":"66","author":"Hanna","year":"2023","journal-title":"Eur. J. Vasc. Endovasc. Surg."},{"key":"ref_22","doi-asserted-by":"crossref","first-page":"2077","DOI":"10.1007\/s11136-016-1243-4","article-title":"Development of the Cardiac Surgery Patient Expectations Questionnaire (C-SPEQ)","volume":"25","author":"Holmes","year":"2016","journal-title":"Qual. Life Res."},{"key":"ref_23","doi-asserted-by":"crossref","first-page":"e000315","DOI":"10.1136\/openhrt-2015-000315","article-title":"Patient-Reported Outcome Measures (PROMS) in patients undergoing heart valve surgery: Why should we measure them and which instruments should we use?","volume":"3","author":"Holmes","year":"2016","journal-title":"Open Heart"},{"key":"ref_24","doi-asserted-by":"crossref","first-page":"481","DOI":"10.1097\/ALN.0000000000000587","article-title":"Patient-centered endpoints for perioperative outcomes research","volume":"122","author":"Kalkman","year":"2015","journal-title":"Anesthesiology"},{"key":"ref_25","doi-asserted-by":"crossref","first-page":"E82","DOI":"10.1179\/jmt.2008.16.4.82E","article-title":"Clinimetrics Corner: The Minimal Clinically Important Change Score (MCID): A Necessary Pretense","volume":"16","author":"Cook","year":"2008","journal-title":"J. Man. Manip. Ther."},{"key":"ref_26","doi-asserted-by":"crossref","first-page":"411","DOI":"10.1186\/s13054-019-2678-0","article-title":"The impact of intensive care unit diaries on patients\u2019 and relatives\u2019 outcomes: A systematic review and meta-analysis","volume":"23","author":"Barreto","year":"2019","journal-title":"Crit. Care"},{"key":"ref_27","doi-asserted-by":"crossref","first-page":"944","DOI":"10.1177\/0218492314523630","article-title":"Continuity of care by cardiothoracic nurse practitioners: Impact on outcome","volume":"22","author":"Southey","year":"2014","journal-title":"Asian Cardiovasc. Thorac. Ann."},{"key":"ref_28","doi-asserted-by":"crossref","first-page":"1029","DOI":"10.1016\/j.amjcard.2008.12.013","article-title":"Characteristics and in-hospital outcomes of patients with cardiac tamponade complicating type A acute aortic dissection","volume":"103","author":"Gilon","year":"2009","journal-title":"Am. J. Cardiol."},{"key":"ref_29","doi-asserted-by":"crossref","first-page":"733","DOI":"10.1016\/j.jacc.2005.05.023","article-title":"Acute aortic dissection presenting with congestive heart failure: Results from the International Registry of Acute Aortic Dissection","volume":"46","author":"Januzzi","year":"2005","journal-title":"J. Am. Coll. Cardiol."},{"key":"ref_30","doi-asserted-by":"crossref","first-page":"1041","DOI":"10.1002\/jcu.23299","article-title":"Aortic regurgitation: A multimodality approach","volume":"50","author":"Siani","year":"2022","journal-title":"J. Clin. Ultrasound"}],"container-title":["Journal of Clinical Medicine"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/www.mdpi.com\/2077-0383\/12\/20\/6584\/pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,10,10]],"date-time":"2025-10-10T21:08:50Z","timestamp":1760130530000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.mdpi.com\/2077-0383\/12\/20\/6584"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2023,10,18]]},"references-count":30,"journal-issue":{"issue":"20","published-online":{"date-parts":[[2023,10]]}},"alternative-id":["jcm12206584"],"URL":"https:\/\/doi.org\/10.3390\/jcm12206584","relation":{},"ISSN":["2077-0383"],"issn-type":[{"value":"2077-0383","type":"electronic"}],"subject":[],"published":{"date-parts":[[2023,10,18]]}}}