Advance Care Planning in Adults with Congenital Heart Diseases: current practices, preferences and needs of 8,281 adults from 32 countries.
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.
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.
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.
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.
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.
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.
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.
Authors
Van Bulck Van Bulck, Goossens Goossens, Kovacs Kovacs, Luyckx Luyckx, Ladak Ladak, Leye Leye, Van De Bruaene Van De Bruaene, Leong Leong, Kaneva Kaneva, Pavão Pavão, Araujo Araujo, Sasikumar Sasikumar, Gabriel Gabriel, Goshu Goshu, Lu Lu, Enomoto Enomoto, Areias Areias, Kosmidis Kosmidis, Coats Coats, Valente Valente, Moon Moon, Ladouceur Ladouceur, Thomet Thomet, Jackson Jackson, Sandberg Sandberg, Callus Callus, Kim Kim, Lykkeberg Lykkeberg, Alday Alday, Bredy Bredy, Saidi Saidi, Baraona Reyes Baraona Reyes, Menahem Menahem, de Hosson de Hosson, Mandelenakis Mandelenakis, Christersson Christersson, Zaidi Zaidi, Johansson Johansson, Andresen Andresen, Ambassa Ambassa, Mattsson Mattsson, Constantine Constantine, Amedro Amedro, Van Melle Van Melle, Cedars Cedars, Ortiz Ortiz, Demir Demir, Khairy Khairy, Windram Windram, Bouchardy Bouchardy, Caruana Caruana, Jameson Jameson, Mahadevan Mahadevan, McGrath McGrath, Mwita Mwita, Moons Moons, ,
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