Advance Care Planning in Adults With Congenital Heart Diseases: Current Practices, Preferences, and Needs of 8,281 Adults From 32 Countries
Year: 2026
Type: article
Study design: Observational Study
Abstract: BACKGROUND: Adults with congenital heart disease (CHD) are at high risk of premature death, making advance care planning (ACP) crucial for aligning care with individual values and goals. Previous ACP research has focused primarily on the United States and Canada, highlighting the need for a global perspective. We aimed to describe the ACP practices, needs, and preferences of adults with CHD around the globe and to investigate associations with patient-related factors. METHODS: This cross-sectional study, part of the APPROACH-IS II project, assessed ACP preferences, needs, and practices by means of patient-reported surveys. Overall, 8281 patients with CHD (median age 32 years; 54% women; 15% mild, 58% moderate, 27% complex CHD) from 53 centres in 32 countries, spanning 6 continents, were included. RESULTS: More than one-half of participants (55%) reported speaking to their physician about how their health might be in the future and 9% had preferences being documented in a plan. According to 66% of patients, the best time to initiate ACP is early in the disease trajectory. Most patients indicated being relatively comfortable talking to their physician about their future health and about death. ACP varied widely across different countries, with the United States and Canada at the top of the class for most variables. CONCLUSIONS: When looking at global ACP practices, needs, and preferences, much room for improvement of ACP provision could be noticed. Also, a notable variation in ACP was observed worldwide. CLINICAL TRIAL REGISTRATION: NCT04902768.
Source: Canadian Journal of Cardiology
Authors: Liesbet Van Bulck, Eva Goossens, Adrienne H. Kovacs, Koen Luyckx, Laila Akbar Ladak, Mohamed Leye, Alexander Van De Bruaene, Ming Chern Leong, Anna Kaneva, Rafael Brolio Pavão, John Jairo Araujo, Navaneetha Sasikumar, Harald Gabriel, Dejuma Yadeta Goshu, Chun-Wei Lu, Junko Enomoto, Maria Emília Areias, Diamantis Kosmidis, Louise Coats, Anne Marie Valente, Ju Ryoung Moon, Magalie Ladouceur, Corina Thomet, Jamie L. Jackson, Camilla Sandberg, Edward Callus, Yuli Y. Kim, Birgitte Lykkeberg, Luis Alday, Charlene Bredy, Arwa Saidi, Fernando Baraona Reyes, Samuel Menahem, Michèle de Hosson, Zacharias Mandelenakis, Christina Christersson, Ali Zaidi, Bengt Johansson, Brith Andresen, Jean-Claude Ambassa, Eva Mattsson, Andrew Constantine, Pascal Amedro, Joost P. van Melle, Ari Cedars, Lucia Ortiz, Fatma Demir, Paul Khairy, Jonathan Windram, Judith Bouchardy, Maryanne Caruana, Susan M. Jameson, Vaikom S. Mahadevan, Lidija B. McGrath, Julius Chacha Mwita, Philip Moons
Institutions: Research Foundation - Flanders, KU Leuven, University of Antwerp, Oregon Health & Science University, University of the Free State, Aga Khan University, Université de Thiès, National Heart Institute, National Heart Hospital, Universidade de São Paulo, Amrita Institute of Medical Sciences and Research Centre, Amrita Vishwa Vidyapeetham, Medical University of Vienna, Addis Ababa University, National Taiwan University Hospital, Toyo University, Chiba Cerebral and Cardiovascular Center, Universidade do Porto, Aristotle University of Thessaloniki, AHEPA University Hospital, Newcastle University, Brigham and Women's Hospital, Boston Children's Hospital, Harvard University, Samsung Medical Center, Assistance Publique – Hôpitaux de Paris, Hôpital Européen Georges-Pompidou, University Hospital of Geneva, University of Bern, University Hospital of Bern, Nationwide Children's Hospital, Umeå University, University of Milan, IRCCS Policlinico San Donato, Children's Hospital of Philadelphia, Hospital of the University of Pennsylvania, Copenhagen University Hospital, Rigshospitalet, Hospital de Niños de la Santísima Trinidad, Centre Hospitalier Universitaire de Montpellier, University of Florida Health, Pontificia Universidad Católica de Chile, Instituto Nacional del Tórax, Monash University, Ghent University Hospital, Sahlgrenska University Hospital, University of Gothenburg, Uppsala University, Mount Sinai Hospital, Oslo University Hospital, Karolinska Institutet, Guy's and St Thomas' NHS Foundation Trust, Harefield Hospital, Royal Brompton Hospital, Université de Bordeaux, Inserm, Electrophysiology and Heart Modeling Institute, University Medical Center Groningen, Johns Hopkins Hospital, Ege University, Montreal Heart Institute, Université de Montréal, University of Alberta, Centre Hospitalier Universitaire Vaudois, University of Lausanne, Mater Dei Hospital, Lucile Packard Children's Hospital, Stanford Health Care, Stanford University, University of Massachusetts Chan Medical School, University of California, San Francisco, University of Botswana, University of Cape Town
Language: English
Field: Medicine
Domain: Health Sciences
Open Access status: hybrid
Estimated APC paid: $3,710
OpenAlex ID: W7119471565