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Lookup NU author(s): Dr Louise Coats
This work is licensed under a Creative Commons Attribution 4.0 International License (CC BY 4.0).
© 2025 The AuthorsIntroduction: Person-centred care (PCC) is widely recommended by the World Health Organisation and other leading healthcare organisations. Although individuals with congenital heart disease (CHD) require lifelong follow-up, it remains unclear whether healthcare systems worldwide provide PCC to this population. This study investigated one key component of PCC, autonomy support, using patient-reported experiences in a global sample of adults with CHD. Methods: The study was part of the international cross-sectional APPROACH-IS-II. Data were obtained from 8367 adults with congenital heart disease across 53 centres in 32 countries. Perceived autonomy support was measured using a modified version of the Health Care Climate Questionnaire. A general linear mixed model was used to analyse the data. Results: Autonomy support scores ranged from 27.9 (SD ± 9.4) to 37.7 (SD ± 6.3) on a six - 42 point scale. A significant clinical difference in perceived autonomy was observed, with calculated effect sizes using Cohen's D exceeding eight in several countries. Higher autonomy scores were associated with having a high school diploma and older age. Patient characteristics accounted for 1.4 % of the variance, while geographical location explained 7.5 %. A large proportion of the variance remained unexplained. Conclusion: This study highlights significant global differences in perceived autonomy support from healthcare providers among adults with CHD. Education and age were associated with higher levels of perceived autonomy support. The experience of PCC is challenged by diverse expectations of individuals and families, healthcare providers' beliefs and values, institutional policies, and broader sociocultural contexts.
Author(s): Lykkeberg B, Christensen AV, Berg SK, Larsen SH, Van Bulck L, Goossens E, Kovacs AH, Luyckx K, Ladak LA, Leye M, Van De Bruaene A, Leong MC, Kaneva A, Amaral F, Araujo JJ, Sasikumar N, Gabriel H, Goshu DY, Wang J-K, Enomoto J, Areias ME, Kosmidis D, Coats L, Valente AM, Moon JR, Ladouceur M, Thomet C, Jackson JL, Sandberg C, Callus E, Kim YY, Alday L, Bredy C, Saidi A, Reyes FB, Menahem S, de Hosson M, Hlebowicz J, Christersson C, Zaidi A, Johansson B, Andresen B, Ambassa J-C, Mandalenakis Z, 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
Publication type: Article
Publication status: Published
Journal: International Journal of Cardiology
Year: 2025
Pages: epub ahead of print
Online publication date: 07/10/2025
Acceptance date: 03/10/2025
Date deposited: 25/11/2025
ISSN (print): 0167-5273
ISSN (electronic): 1874-1754
Publisher: Elsevier Ireland Ltd
URL: https://doi.org/10.1016/j.ijcard.2025.133958
DOI: 10.1016/j.ijcard.2025.133958
Data Access Statement: The data underlying this article can be shared on reasonable request to the corresponding author.
PubMed id: 41067646
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