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.