{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,3,29]],"date-time":"2026-03-29T05:26:06Z","timestamp":1774761966908,"version":"3.50.1"},"reference-count":33,"publisher":"Oxford University Press (OUP)","issue":"4","license":[{"start":{"date-parts":[[2023,7,14]],"date-time":"2023-07-14T00:00:00Z","timestamp":1689292800000},"content-version":"vor","delay-in-days":13,"URL":"https:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"funder":[{"name":"Thorax Foundation"},{"name":"Stichting \u2018t Trekpaert"},{"name":"De hoop leven fond"},{"name":"Stichting Pieter Bastiaan"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2023,7,3]]},"abstract":"<jats:title>Abstract<\/jats:title>\n               <jats:sec>\n                  <jats:title>Aims<\/jats:title>\n                  <jats:p>Although survival of patients with congenital heart disease (CHD) improved significantly over time, life expectancy is still not normal. We aimed to investigate how adult patients, their partners, and treating cardiologists estimated the individual life expectancy of CHD patients. Furthermore, preferences regarding end-of-life (EOL) communication were investigated.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Methods and results<\/jats:title>\n                  <jats:p>In this study, we included 202 patients (age: 50 \u00b1 5) who were operated in childhood (&amp;lt;15 years old) between 1968 and 1980 for one of the following diagnoses: atrial septal defect, ventricular septal defect, pulmonary stenosis, tetralogy of Fallot, or transposition of the great arteries. A specific questionnaire was administered to both the patients and their partners, exploring their perceived life expectancy and EOL wishes. Two cardiologists independently assessed the life expectancy of each patient. Most adults with CHD believed their life expectancy to be normal. However, significant differences were found between estimated life expectancy by the cardiologist and patients (female: P = 0.001, male: P = 0.002) with moderate\/severe defects, as well as for males with mild defects (P = 0.011). Regarding EOL communication, 85.1% of the patients reported that they never discussed EOL with a healthcare professional. Compared with patients with mild CHD, significantly more patients with moderate\/severe defect discussed EOL with a physician (P = 0.011). The wish to discuss EOL with the cardiologist was reported by 49.3% of the patients and 41.7% of their partners.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Conclusion<\/jats:title>\n                  <jats:p>Adult patients, especially with moderate\/severe CHD, perceived their life expectancy as normal, whereas cardiologists had a more pessimistic view than their patients. Increased attention is warranted for discussions on life expectancy and EOL to improve patient-tailored care.<\/jats:p>\n               <\/jats:sec>","DOI":"10.1093\/ehjopen\/oead067","type":"journal-article","created":{"date-parts":[[2023,7,12]],"date-time":"2023-07-12T20:00:36Z","timestamp":1689192036000},"source":"Crossref","is-referenced-by-count":8,"title":["Life expectancy and end-of-life communication in adult patients with congenital heart disease, 40\u201353 years after surgery"],"prefix":"10.1093","volume":"3","author":[{"given":"Chiara","family":"Pelosi","sequence":"first","affiliation":[{"name":"Department of Cardiology, Erasmus MC , P.O. Box 2040, Rotterdam 3000 CA , The Netherlands"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Robert M","family":"Kauling","sequence":"additional","affiliation":[{"name":"Department of Cardiology, Erasmus MC , P.O. Box 2040, Rotterdam 3000 CA , The Netherlands"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Judith A A E","family":"Cuypers","sequence":"additional","affiliation":[{"name":"Department of Cardiology, Erasmus MC , P.O. Box 2040, Rotterdam 3000 CA , The Netherlands"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Elisabeth M W J","family":"Utens","sequence":"additional","affiliation":[{"name":"Academic Center for Child and Adolescent Psychiatry , Levvel, Meibergdreef 5, 1105 AZ, Amsterdam , The Netherlands"},{"name":"Department of Child and Adolescent Psychiatry\/Psychology, Erasmus Medical Center-Sophia Children\u2019s Hospital , Wytemaweg 80, Rotterdam , The Netherlands"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Annemien E","family":"van den Bosch","sequence":"additional","affiliation":[{"name":"Department of Cardiology, Erasmus MC , P.O. Box 2040, Rotterdam 3000 CA , The Netherlands"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Agnes","family":"van der Heide","sequence":"additional","affiliation":[{"name":"Department of Public Health , Erasmus MC, Dr. Molewaterplein 40, Rotterdam , The Netherlands"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jeroen S","family":"Legerstee","sequence":"additional","affiliation":[{"name":"Department of Child and Adolescent Psychiatry\/Psychology, Erasmus Medical Center-Sophia Children\u2019s Hospital , Wytemaweg 80, Rotterdam , The Netherlands"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6770-3830","authenticated-orcid":false,"given":"Jolien W","family":"Roos-Hesselink","sequence":"additional","affiliation":[{"name":"Department of Cardiology, Erasmus MC , P.O. Box 2040, Rotterdam 3000 CA , The Netherlands"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"286","published-online":{"date-parts":[[2023,7,13]]},"reference":[{"key":"2023071403051084600_oead067-B1","doi-asserted-by":"crossref","first-page":"2264","DOI":"10.1161\/CIRCULATIONAHA.110.946343","article-title":"Temporal trends in survival to adulthood among patients born with congenital heart disease from 1970 to 1992 in Belgium","volume":"122","author":"Moons","year":"2010","journal-title":"Circulation"},{"key":"2023071403051084600_oead067-B2","doi-asserted-by":"crossref","first-page":"2219","DOI":"10.1016\/j.jacc.2021.03.012","article-title":"Lifespan perspective on congenital heart disease research: JACC state-of-the-art review","volume":"77","author":"Diller","year":"2021","journal-title":"J Am Coll Cardiol"},{"key":"2023071403051084600_oead067-B3","doi-asserted-by":"crossref","first-page":"930","DOI":"10.1161\/CIRCULATIONAHA.122.060834","article-title":"Adults with congenital heart disease: trends in event-free survival past middle age","volume":"147","author":"Dellborg","year":"2023","journal-title":"Circulation"},{"key":"2023071403051084600_oead067-B4","doi-asserted-by":"crossref","first-page":"2118","DOI":"10.1161\/CIRCULATIONAHA.115.017202","article-title":"Survival prospects and circumstances of death in contemporary adult congenital heart disease patients under follow-up at a large tertiary centre","volume":"132","author":"Diller","year":"2015","journal-title":"Circulation"},{"key":"2023071403051084600_oead067-B5","doi-asserted-by":"crossref","first-page":"1111","DOI":"10.1016\/S0002-9149(00)01169-3","article-title":"Mode of death in adults with congenital heart disease","volume":"86","author":"Oechslin","year":"2000","journal-title":"Am J Cardiol"},{"key":"2023071403051084600_oead067-B6","doi-asserted-by":"crossref","first-page":"1238","DOI":"10.1016\/j.amjcard.2005.10.065","article-title":"Incidence and risk distribution of heart failure in adolescents and adults with congenital heart disease after cardiac surgery","volume":"97","author":"Norozi","year":"2006","journal-title":"Am J Cardiol"},{"key":"2023071403051084600_oead067-B7","doi-asserted-by":"crossref","first-page":"4200","DOI":"10.1093\/eurheartj\/ehaa614","article-title":"Recommendations for advance care planning in adults with congenital heart disease: a position paper from the ESC working group of adult congenital heart disease, the Association of Cardiovascular Nursing and Allied Professions (ACNAP), the European Association for Palliative Care (EAPC), and the International Society for Adult Congenital Heart Disease (ISACHD)","volume":"41","author":"Schwerzmann","year":"2020","journal-title":"Eur Heart J"},{"key":"2023071403051084600_oead067-B8","doi-asserted-by":"crossref","first-page":"383","DOI":"10.1016\/j.ijcard.2010.10.050","article-title":"End-of-life in adults with congenital heart disease: a call for early communication","volume":"155","author":"Tobler","year":"2012","journal-title":"Int J Cardiol"},{"key":"2023071403051084600_oead067-B9","doi-asserted-by":"crossref","first-page":"563","DOI":"10.1093\/eurheartj\/ehaa554","article-title":"2020 ESC guidelines for the management of adult congenital heart disease","volume":"42","author":"Baumgartner","year":"2021","journal-title":"Eur Heart J"},{"key":"2023071403051084600_oead067-B10","author":"Utens en Legerstee, Vragenlijst levenseinde en communicatie, Kauling","year":"2019"},{"key":"2023071403051084600_oead067-B11","doi-asserted-by":"crossref","first-page":"529.e1","DOI":"10.1016\/j.jadohealth.2004.02.009","article-title":"What do adolescents want? An exploratory study regarding end-of-life decision-making","volume":"35","author":"Lyon","year":"2004","journal-title":"J Adolesc Health"},{"key":"2023071403051084600_oead067-B12","author":"CBS\u2014Dutch Institute of Statistics","year":"2021"},{"key":"2023071403051084600_oead067-B13","doi-asserted-by":"crossref","first-page":"349","DOI":"10.1016\/j.jacc.2006.03.041","article-title":"Estimates of life expectancy by adolescents and young adults with congenital heart disease","volume":"48","author":"Reid","year":"2006","journal-title":"J Am Coll Cardiol"},{"key":"2023071403051084600_oead067-B14","doi-asserted-by":"crossref","first-page":"1678","DOI":"10.1136\/heartjnl-2017-312777","article-title":"Causes of death in a contemporary adult congenital heart disease cohort","volume":"104","author":"Yu","year":"2018","journal-title":"Heart"},{"key":"2023071403051084600_oead067-B15","first-page":"1233","article-title":"Risk factors for excess mortality in adults with congenital heart diseases","volume":"38","author":"Oliver","year":"2017","journal-title":"Eur Heart J"},{"key":"2023071403051084600_oead067-B16","doi-asserted-by":"crossref","DOI":"10.1136\/bmjopen-2016-012248","article-title":"How long do patients with chronic disease expect to live? A systematic review of the literature","volume":"6","author":"Hole","year":"2016","journal-title":"BMJ Open"},{"key":"2023071403051084600_oead067-B17","doi-asserted-by":"crossref","first-page":"2533","DOI":"10.1001\/jama.299.21.2533","article-title":"Discordance between patient-predicted and model-predicted life expectancy among ambulatory patients with heart failure","volume":"299","author":"Allen","year":"2008","journal-title":"JAMA"},{"key":"2023071403051084600_oead067-B18","first-page":"74","article-title":"What do adult patients with congenital heart disease know about their disease, treatment, and prevention of complications? A call for structured patient education","volume":"86","author":"Moons","year":"2001","journal-title":"Heart"},{"key":"2023071403051084600_oead067-B19","first-page":"641","article-title":"Adult patients\u2019 knowledge about their congenital heart disease","volume":"13","author":"Kantoch","year":"1997","journal-title":"Can J Cardiol"},{"key":"2023071403051084600_oead067-B20","doi-asserted-by":"crossref","first-page":"395","DOI":"10.1136\/heart.84.4.395","article-title":"Illness understanding in children and adolescents with heart disease","volume":"84","author":"Veldtman","year":"2000","journal-title":"Heart"},{"key":"2023071403051084600_oead067-B21","first-page":"194","article-title":"Parental knowledge and views of pediatric congenital heart disease","volume":"3","author":"Beeri","year":"2001","journal-title":"Isr Med Assoc J"},{"key":"2023071403051084600_oead067-B22","doi-asserted-by":"crossref","first-page":"995","DOI":"10.1001\/archpedi.1985.02140120041025","article-title":"Physician\u2013patient communication. Understanding congenital heart disease","volume":"139","author":"Kaden","year":"1985","journal-title":"Am J Dis Child"},{"key":"2023071403051084600_oead067-B23","doi-asserted-by":"crossref","first-page":"1797","DOI":"10.1016\/j.amjcard.2012.02.027","article-title":"Knowledge of and preference for advance care planning by adults with congenital heart disease","volume":"109","author":"Tobler","year":"2012","journal-title":"Am J Cardiol"},{"key":"2023071403051084600_oead067-B24","doi-asserted-by":"crossref","first-page":"25","DOI":"10.2174\/1745017901006010025","article-title":"Optimism and its impact on mental and physical well-being","volume":"6","author":"Conversano","year":"2010","journal-title":"Clin Pract Epidemiol Ment Health"},{"key":"2023071403051084600_oead067-B25","doi-asserted-by":"crossref","first-page":"18357","DOI":"10.1073\/pnas.1900712116","article-title":"Optimism is associated with exceptional longevity in 2 epidemiologic cohorts of men and women","volume":"116","author":"Lee","year":"2019","journal-title":"Proc Natl Acad Sci U S A"},{"key":"2023071403051084600_oead067-B26","first-page":"304","article-title":"Actieve betrokkenheid, beschermend bufferen en overbescherming. Meetinstrumenten voor de rol van de partner bij hartrevalidatie. [The role of the partner in heart disease: active engagement, protective buffering, and overprotection.]","volume":"24","author":"Buunk","year":"1996","journal-title":"Gedrag & Gezondheid: Tijdschrift voor Psychologie en Gezondheid"},{"key":"2023071403051084600_oead067-B27","doi-asserted-by":"crossref","first-page":"571","DOI":"10.3389\/fpsyg.2019.00571","article-title":"Dyadic coping in couples: a conceptual integration and a review of the empirical literature","volume":"10","author":"Falconier","year":"2019","journal-title":"Front Psychol"},{"key":"2023071403051084600_oead067-B28","doi-asserted-by":"crossref","first-page":"72","DOI":"10.1177\/0269216311407694","article-title":"End-of-life care in hospitalized adults with complex congenital heart disease: care delayed, care denied","volume":"26","author":"Tobler","year":"2012","journal-title":"Palliat Med"},{"key":"2023071403051084600_oead067-B29","doi-asserted-by":"crossref","first-page":"291","DOI":"10.1097\/SPC.0b013e3283492aa3","article-title":"Supportive and palliative care for adults dying from congenital heart defect","volume":"5","author":"Tobler","year":"2011","journal-title":"Curr Opin Support Palliat Care"},{"key":"2023071403051084600_oead067-B30","doi-asserted-by":"crossref","first-page":"57","DOI":"10.1016\/j.ijcard.2018.10.078","article-title":"Advanced care planning in adult congenital heart disease: transitioning from repair to palliation and end-of-life care","volume":"279","author":"Troost","year":"2019","journal-title":"Int J Cardiol"},{"key":"2023071403051084600_oead067-B31","doi-asserted-by":"crossref","first-page":"549","DOI":"10.1001\/jamainternmed.2014.7732","article-title":"Barriers to goals of care discussions with seriously ill hospitalized patients and their families: a multicenter survey of clinicians","volume":"175","author":"You","year":"2015","journal-title":"JAMA Intern Med"},{"key":"2023071403051084600_oead067-B32","doi-asserted-by":"crossref","first-page":"466","DOI":"10.1136\/postgradmedj-2015-133368","article-title":"Communication in palliative care: talking about the end of life, before the end of life","volume":"92","author":"Brighton","year":"2016","journal-title":"Postgrad Med J"},{"key":"2023071403051084600_oead067-B33","doi-asserted-by":"crossref","first-page":"62","DOI":"10.1177\/2150135112464235","article-title":"Advance care planning and end-of-life management of adult patients with congenital heart disease","volume":"4","author":"Kovacs","year":"2013","journal-title":"World J Pediatr Congenit Heart Surg"}],"container-title":["European Heart Journal Open"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/academic.oup.com\/ehjopen\/article-pdf\/3\/4\/oead067\/50880507\/oead067.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"syndication"},{"URL":"https:\/\/academic.oup.com\/ehjopen\/article-pdf\/3\/4\/oead067\/50880507\/oead067.pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,7,14]],"date-time":"2023-07-14T03:07:13Z","timestamp":1689304033000},"score":1,"resource":{"primary":{"URL":"https:\/\/academic.oup.com\/ehjopen\/article\/doi\/10.1093\/ehjopen\/oead067\/7223736"}},"subtitle":[],"editor":[{"given":"Edit","family":"Nagy","sequence":"additional","affiliation":[],"role":[{"role":"editor","vocabulary":"crossref"}]}],"short-title":[],"issued":{"date-parts":[[2023,7]]},"references-count":33,"journal-issue":{"issue":"4","published-print":{"date-parts":[[2023,7,3]]}},"URL":"https:\/\/doi.org\/10.1093\/ehjopen\/oead067","relation":{},"ISSN":["2752-4191"],"issn-type":[{"value":"2752-4191","type":"electronic"}],"subject":[],"published-other":{"date-parts":[[2023,7]]},"published":{"date-parts":[[2023,7]]},"article-number":"oead067"}}