Person-centred care in congenital heart disease: Intercountry variation in patient-reported experiences across 32 countries.
Journal
International journal of cardiology
Journal Volume
444
ISSN
1874-1754
Date Issued
2026-02-01
Author(s)
Lykkeberg, Birgitte
Christensen, Anne Vinggaard
Berg, Selina Kikkenborg
Larsen, Signe Holm
Van Bulck, Liesbet
Goossens, Eva
Kovacs, Adrienne H
Luyckx, Koen
Ladak, Laila Akbar
Leye, Mohamed
Van De Bruaene, Alexander
Leong, Ming Chern
Kaneva, Anna
Amaral, Fernando
Araujo, John Jairo
Sasikumar, Navaneetha
Gabriel, Harald
Goshu, Dejuma Yadeta
Enomoto, Junko
Areias, Maria Emília
Kosmidis, Diamantis
Coats, Louise
Valente, Anne Marie
Moon, Ju Ryoung
Ladouceur, Magalie
Thomet, Corina
Jackson, Jamie L
Sandberg, Camilla
Callus, Edward
Kim, Yuli Y
Alday, Luis
Bredy, Charlene
Saidi, Arwa
Reyes, Fernando Baraona
Menahem, Samuel
de Hosson, Michèle
Hlebowicz, Joanna
Christersson, Christina
Zaidi, Ali
Johansson, Bengt
Andresen, Brith
Ambassa, Jean-Claude
Mandalenakis, Zacharias
Constantine, Andrew
Amedro, Pascal
Van Melle, Joost P
Cedars, Ari
Ortiz, Lucia
Demir, Fatma
Khairy, Paul
Windram, Jonathan
Bouchardy, Judith
Caruana, Maryanne
Jameson, Susan M
Mahadevan, Vaikom S
McGrath, Lidija B
Mwita, Julius Chacha
Moons, Philip
Abstract
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.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.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.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.
Subjects
ACHD care
Autonomy support
Congenital heart disease
PREMs
Patient-Centred care
Person-Centred care
SDGs
Type
journal article