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

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; APPROACH-IS II consortium

doi:10.1016/j.cjca.2025.12.039

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

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 ValenteJu 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, APPROACH-IS II consortium

Afdeling for Hjertesygdomme HJE

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.

Originalsprog	Engelsk
Tidsskrift	The Canadian journal of cardiology
ISSN	0828-282X
DOI	https://doi.org/10.1016/j.cjca.2025.12.039
Status	E-pub ahead of print - 8 jan. 2026

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10.1016/j.cjca.2025.12.039Licens: CC BY

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Van Bulck, L., Goossens, E., Kovacs, A. H., Luyckx, K., Ladak, L. A., Leye, M., Van De Bruaene, A., Leong, M. C., Kaneva, A., Pavão, R. B., Araujo, J. J., Sasikumar, N., Gabriel, H., Goshu, D. Y., Lu, C.-W., Enomoto, J., Areias, M. E., Kosmidis, D., Coats, L., ... APPROACH-IS II consortium (2026). Advance Care Planning in Adults with Congenital Heart Diseases: current practices, preferences and needs of 8,281 adults from 32 countries. The Canadian journal of cardiology. Advance online publication. https://doi.org/10.1016/j.cjca.2025.12.039

Van Bulck, L, Goossens, E, Kovacs, AH, Luyckx, K, Ladak, LA, Leye, M, Van De Bruaene, A, Leong, MC, Kaneva, A, Pavão, RB, Araujo, JJ, Sasikumar, N, Gabriel, H, Goshu, DY, Lu, C-W, Enomoto, J, Areias, ME, Kosmidis, D, Coats, L, Valente, AM, Moon, JR, Ladouceur, M, Thomet, C, Jackson, JL, Sandberg, C, Callus, E, Kim, YY, Lykkeberg, B, Alday, L, Bredy, C, Saidi, A, Baraona Reyes, F, Menahem, S, de Hosson, M, Mandelenakis, Z, Christersson, C, Zaidi, A, Johansson, B, Andresen, B, Ambassa, J-C, Mattsson, E, Constantine, A, Amedro, P, Van Melle, JP, Cedars, A, Ortiz, L, Demir, F, Khairy, P, Windram, J, Bouchardy, J, Caruana, M, Jameson, SM, Mahadevan, VS, McGrath, LB, Mwita, JC, Moons, P & APPROACH-IS II consortium 2026, 'Advance Care Planning in Adults with Congenital Heart Diseases: current practices, preferences and needs of 8,281 adults from 32 countries', The Canadian journal of cardiology. https://doi.org/10.1016/j.cjca.2025.12.039

@article{bd2fe6410f704aca97eafd17ed9dc540,

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

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.",

author = "{Van Bulck}, Liesbet and Eva Goossens and Kovacs, {Adrienne H} and Koen Luyckx and Ladak, {Laila Akbar} and Mohamed Leye and {Van De Bruaene}, Alexander and Leong, {Ming Chern} and Anna Kaneva and Pav{\~a}o, {Rafael Brolio} and Araujo, {John Jairo} and Navaneetha Sasikumar and Harald Gabriel and Goshu, {Dejuma Yadeta} and Chun-Wei Lu and Junko Enomoto and Areias, {Maria Em{\'i}lia} and Diamantis Kosmidis and Louise Coats and Valente, {Anne Marie} and Moon, {Ju Ryoung} and Magalie Ladouceur and Corina Thomet and Jackson, {Jamie L} and Camilla Sandberg and Edward Callus and Kim, {Yuli Y} and Birgitte Lykkeberg and Luis Alday and Charlene Bredy and Arwa Saidi and {Baraona Reyes}, Fernando and Samuel Menahem and {de Hosson}, Mich{\`e}le and Zacharias Mandelenakis and Christina Christersson and Ali Zaidi and Bengt Johansson and Brith Andresen and Jean-Claude Ambassa and Eva Mattsson and Andrew Constantine and Pascal Amedro and {Van Melle}, {Joost P} and Ari Cedars and Lucia Ortiz and Fatma Demir and Paul Khairy and Jonathan Windram and Judith Bouchardy and Maryanne Caruana and Jameson, {Susan M} and Mahadevan, {Vaikom S} and McGrath, {Lidija B} and Mwita, {Julius Chacha} and Philip Moons and {APPROACH-IS II consortium}",

note = "Copyright {\textcopyright} 2026. Published by Elsevier Inc.",

year = "2026",

month = jan,

day = "8",

doi = "10.1016/j.cjca.2025.12.039",

language = "English",

journal = "The Canadian journal of cardiology",

issn = "0828-282X",

publisher = "Elsevier Inc.",

}

TY - JOUR

T1 - Advance Care Planning in Adults with Congenital Heart Diseases

T2 - current practices, preferences and needs of 8,281 adults from 32 countries

AU - Van Bulck, Liesbet

AU - Goossens, Eva

AU - Kovacs, Adrienne H

AU - Luyckx, Koen

AU - Ladak, Laila Akbar

AU - Leye, Mohamed

AU - Van De Bruaene, Alexander

AU - Leong, Ming Chern

AU - Kaneva, Anna

AU - Pavão, Rafael Brolio

AU - Araujo, John Jairo

AU - Sasikumar, Navaneetha

AU - Gabriel, Harald

AU - Goshu, Dejuma Yadeta

AU - Lu, Chun-Wei

AU - Enomoto, Junko

AU - Areias, Maria Emília

AU - Kosmidis, Diamantis

AU - Coats, Louise

AU - Valente, Anne Marie

AU - Moon, Ju Ryoung

AU - Ladouceur, Magalie

AU - Thomet, Corina

AU - Jackson, Jamie L

AU - Sandberg, Camilla

AU - Callus, Edward

AU - Kim, Yuli Y

AU - Lykkeberg, Birgitte

AU - Alday, Luis

AU - Bredy, Charlene

AU - Saidi, Arwa

AU - Baraona Reyes, Fernando

AU - Menahem, Samuel

AU - de Hosson, Michèle

AU - Mandelenakis, Zacharias

AU - Christersson, Christina

AU - Zaidi, Ali

AU - Johansson, Bengt

AU - Andresen, Brith

AU - Ambassa, Jean-Claude

AU - Mattsson, Eva

AU - Constantine, Andrew

AU - Amedro, Pascal

AU - Van Melle, Joost P

AU - Cedars, Ari

AU - Ortiz, Lucia

AU - Demir, Fatma

AU - Khairy, Paul

AU - Windram, Jonathan

AU - Bouchardy, Judith

AU - Caruana, Maryanne

AU - Jameson, Susan M

AU - Mahadevan, Vaikom S

AU - McGrath, Lidija B

AU - Mwita, Julius Chacha

AU - Moons, Philip

AU - APPROACH-IS II consortium

PY - 2026/1/8

Y1 - 2026/1/8

N2 - 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.

AB - 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.

U2 - 10.1016/j.cjca.2025.12.039

DO - 10.1016/j.cjca.2025.12.039

M3 - Journal article

C2 - 41519299

SN - 0828-282X

JO - The Canadian journal of cardiology

JF - The Canadian journal of cardiology

ER -

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

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