Journal article

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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Author list: Liesbet Van Bulck PhD, RN a b
,
Eva Goossens PhD, RN a c
,
Adrienne H. Kovacs PhD d e
,
Koen Luyckx PhD a f
,
Laila Akbar Ladak PhD, RN g
,
Mohamed Leye MD h
,
Alexander Van De Bruaene MD, PhD a i
,
Ming Chern Leong MD j
,
Anna Kaneva MD, PhD k
,
Rafael Brolio Pavão MD, PhD l
,
John Jairo Araujo MD m
,
Navaneetha Sasikumar MD n
,
Harald Gabriel MD, PhD o
,
Dejuma Yadeta Goshu MD p
,
Chun-Wei Lu MD q
,
Junko Enomoto PhD r s
,
Maria Emília Areias PhD t
,
Diamantis Kosmidis MD, MSc u
,
Louise Coats MD, PhD v
,
Anne Marie Valente MD, PhD w
,
Ju Ryoung Moon PhD x
,
Magalie Ladouceur MD, PhD y z
,
Corina Thomet PhD, RN aa
,
Jamie L. Jackson PhD bb
,
Camilla Sandberg RPT, PhD cc
,
Edward Callus PhD dd ee
,
Yuli Y. Kim MD ff
,
Birgitte Lykkeberg RN, MSc gg
,
Luis Alday MD hh
,
Charlene Bredy MD ii
,
Arwa Saidi MD jj
,
Fernando Baraona Reyes MD kk
,
Samuel Menahem MD ll
,
Michèle de Hosson RN, PhD mm
,
Zacharias Mandelenakis MD, PhD nn oo
,
Christina Christersson MD, PhD pp
,
Ali Zaidi MD, PhD qq
,
Bengt Johansson MD, PhD cc
,
Brith Andresen PhD, RN rr
,
Jean-Claude Ambassa MD ss
,
Eva Mattsson MD, PhD tt
,
Andrew Constantine PhD uu
,
Pascal Amedro MD, PhD vv
,
Joost P. van Melle MD, PhD ww
,
Ari Cedars MD, PhD xx
,
Lucia Ortiz MD yy
,
Fatma Demir PhD, RN zz
,
Paul Khairy MD, PhD aaa
,
Jonathan Windram MD, PhD bbb
,
Judith Bouchardy MD z ccc
,
Maryanne Caruana MD, PhD ddd
,
Susan M. Jameson MHP, LPD, PA-C eee
,
Vaikom S. Mahadevan MD fff ggg
,
Lidija B. McGrath MD e
,
Julius Chacha Mwita MD hhh
,
Philip Moons PhD, RN a oo iii
on behalf of the

Publication year: 2026

Journal: Canadian Journal of Cardiology

ISSN: :0828-282X

eISSN: 1916-7075



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


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Last updated on 2026-18-03 at 13:15