Advance Care Planning in Adults with Congenital Heart Diseases: current practices, preferences and needs of 8,281 adults from 32 countries.

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 using patient-reported surveys. Overall, 8,281 patients with CHD (median age 32 years; 54% women; 15% mild, 58% moderate, 27% complex CHD) from 53 centers in 32 countries, spanning 6 continents, were included.Results Over half (55%) of participants 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 United States and Canada 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.

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Publication Details

Journal
Open Access CRIS of the University of Bern
Published
2026-01-08
DOI
https://doi.org/10.48620/94193
Primary Topic
Congenital Heart Disease Studies
Type
article
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article

Advance Care Planning in Adults with Congenital Heart Diseases: current practices, preferences and needs of 8,281 adults from 32 countries.

A Kaneva, M. Areias, Jean-Claude Ambassa, Birgitte Lykkeberg et al.
Open Access CRIS of the University of Bern
Congenital Heart Disease Studies
article

Advance Care Planning in Adults with Congenital Heart Diseases: current practices, preferences and needs of 8,281 adults from 32 countries.

A Kaneva, M. Areias, Jean-Claude Ambassa, Birgitte Lykkeberg, Ming Chern Leong, Rafael Brolio Pavão, Yuli Y. Kim, Luis Alday, Paul Khairy, Camilla Sandberg, Ari Cedars, Liesbet Van Bulck, Diamantis Kosmidis, J. Moon, Julius Chacha Mwita, Michèle de Hosson, Fatma Doğan Demir, Jamie L. Jackson, Z Mandelenakis, Anne Marie Valente, Dejuma Yadeta Goshu, Adrienne H. Kovacs, John Jairo Araujo, Koen Luyckx, Charlene Bredy, Andrew Constantine, Chun-Wei Lu, Alexander Van De Bruaene, Christina Christersson, Pascal Amedro, Susan M Jameson, Lucia Ortiz, Junko Enomoto, Ali Zaidi, Edward Callus, Judith Bouchardy, Lidija B McGrath, Samuel Menahem, Eva Mattsson, Vaikom S Mahadevan, Fernando Baraona Reyes, Laila Akbar Ladak, Navaneetha Sasikumar, Brith Andresen, Corina Thomet, Jonathan Windram, Mohamed Leye, Louise Coats, Harald Gabriel, Bengt Johansson, Arwa Saidi, Magalie Ladouceur, Philip Moons, Joost P Van Melle
article en

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 using patient-reported surveys. Overall, 8,281 patients with CHD (median age 32 years; 54% women; 15% mild, 58% moderate, 27% complex CHD) from 53 centers in 32 countries, spanning 6 continents, were included.Results Over half (55%) of participants 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 United States and Canada 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.

Open Access CRIS of the University of Bern
Good health and well-being
Openalex Percentile: Top 72%
Congenital Heart Disease Studies
DOIOpen Access PDFOpenAlex
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