Person-centred care in congenital heart disease: Intercountry variation in patient-reported experiences across 32 countries
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.
Authors
- Corina Thomet (ORCID: https://orcid.org/0000-0002-9820-8410)
- Joanna Hlebowicz (ORCID: https://orcid.org/0000-0002-9515-7240)
- Samuel Menahem (ORCID: https://orcid.org/0000-0002-6915-2040)
- Navaneetha Sasikumar (ORCID: https://orcid.org/0000-0001-8621-8235)
- Eliana Amaral (ORCID: https://orcid.org/0000-0002-6174-6821)
- Jean-Claude Ambassa
- Ju Ryoung Moon (ORCID: https://orcid.org/0000-0002-4285-0295)
- Birgitte Lykkeberg (ORCID: https://orcid.org/0000-0003-3604-2619)
- Junko Enomoto (ORCID: https://orcid.org/0000-0002-3763-4248)
- Edward Callus (ORCID: https://orcid.org/0000-0001-9286-1825)
- Ming Chern Leong (ORCID: https://orcid.org/0000-0002-7891-8060)
- Anna Kaneva
- Fatma Demi̇r Korkmaz (ORCID: https://orcid.org/0000-0003-3810-297X)
- Alexander Van De Bruaene (ORCID: https://orcid.org/0000-0002-0469-8640)
- Yuli Y. Kim (ORCID: https://orcid.org/0000-0002-2342-192X)
- Jonathan Windram (ORCID: https://orcid.org/0000-0002-0361-9752)
- Luis Alday (ORCID: https://orcid.org/0000-0003-2286-6254)
- Jou‐Kou Wang (ORCID: https://orcid.org/0000-0002-3043-3873)
- Anne Marie Valente (ORCID: https://orcid.org/0000-0002-8357-694X)
- Maria Emília Areias (ORCID: https://orcid.org/0000-0001-7586-0417)
- Charlène Bredy
- Susan M. Jameson (ORCID: https://orcid.org/0000-0002-3062-6827)
- Lidija B. McGrath (ORCID: https://orcid.org/0000-0003-1882-3657)
- Paul Khairy (ORCID: https://orcid.org/0000-0003-4059-3800)
- Camilla Sandberg (ORCID: https://orcid.org/0000-0002-4043-7130)
- Anne Vinggaard Christensen (ORCID: https://orcid.org/0000-0001-7468-9101)
- Arwa Saidi (ORCID: https://orcid.org/0009-0005-9032-3157)
- Ari Cedars (ORCID: https://orcid.org/0000-0002-9975-5301)
- Liesbet Van Bulck (ORCID: https://orcid.org/0000-0001-8975-4455)
- Laila Ladak (ORCID: https://orcid.org/0000-0002-7015-0413)
- Signe Holm Larsen (ORCID: https://orcid.org/0009-0001-9795-6572)
- Judith Bouchardy (ORCID: https://orcid.org/0000-0003-0149-288X)
- Fernando Baraona Reyes
- John Jairo Araujo (ORCID: https://orcid.org/0000-0002-2182-0687)
- Maryanne Caruana (ORCID: https://orcid.org/0000-0003-3947-3350)
- Selina Kikkenborg Berg (ORCID: https://orcid.org/0000-0002-9493-954X)
- Magalie Ladouceur (ORCID: https://orcid.org/0000-0002-4325-3521)
- Diamantis Kosmidis (ORCID: https://orcid.org/0000-0003-4427-8904)
- Andrew Constantine (ORCID: https://orcid.org/0000-0001-7899-463X)
- Joost P. van Melle
- Pascal Amédro (ORCID: https://orcid.org/0000-0003-3649-0294)
- Vaikom S. Mahadevan (ORCID: https://orcid.org/0000-0001-6354-1873)
- Julius Chacha Mwita (ORCID: https://orcid.org/0000-0002-5947-3684)
- Zacharias Mandalenakis (ORCID: https://orcid.org/0000-0001-5093-9743)
- Michèle de Hosson (ORCID: https://orcid.org/0000-0002-8145-2142)
- Lucia Ortiz
- Louise Coats (ORCID: https://orcid.org/0000-0003-3422-5497)
- Eva Goossens (ORCID: https://orcid.org/0000-0003-3421-5256)
- Philip Moons (ORCID: https://orcid.org/0000-0002-8609-4516)
- Ali N. Zaidi (ORCID: https://orcid.org/0000-0001-8255-1591)
- Christina Christersson (ORCID: https://orcid.org/0000-0001-9116-8084)
- Koen Luyckx (ORCID: https://orcid.org/0000-0001-8862-5598)
- Adrienne H. Kovacs (ORCID: https://orcid.org/0000-0002-2687-0384)
- Brith Andresen (ORCID: https://orcid.org/0000-0003-4359-9757)
- Bengt Johansson (ORCID: https://orcid.org/0000-0003-0976-6910)
- Jamie L. Jackson (ORCID: https://orcid.org/0000-0002-1752-1377)
- Harald Gabriel (ORCID: https://orcid.org/0000-0002-2652-7092)
- Mohamed Lèye
- Dejuma Yadeta Goshu
Institutions
- Aga Khan University (PK)
- Uppsala University (SE)
- Oslo University Hospital (NO)
- Amrita Institute of Medical Sciences and Research Centre (IN)
- Brigham and Women's Hospital (US)
- Nationwide Children's Hospital (US)
- University Medical Center Groningen (NL)
- Children's Hospital of Philadelphia (US)
- University of Antwerp (BE)
- University of Alberta (CA)
- University of Botswana (BW)
- Pontificia Universidad Católica de Chile (CL)
- Oregon Health & Science University (US)
- University of Southern Denmark (DK)
- University of California, San Francisco (US)
- Universidade do Porto (PT)
- Lund University (SE)
- Novo Nordisk (Denmark) (DK)
- Université de Montpellier (FR)
- Guy's and St Thomas' NHS Foundation Trust (GB)
- University of the Free State (ZA)
- Montreal Heart Institute (CA)
- University of Florida Health (US)
- Mater Dei Hospital (MT)
- Ghent University Hospital (BE)
- Freeman Hospital (GB)
- Research Foundation - Flanders (BE)
- Samsung Medical Center (KR)
- Copenhagen University Hospital (DK)
- Rigshospitalet (DK)
- Harefield Hospital (GB)
- Ege University (TR)
- Centre Hospitalier Universitaire de Montpellier (FR)
- Hôpital Beau-Séjour (CH)
- Royal Brompton Hospital (GB)
- Assistance Publique – Hôpitaux de Paris (FR)
- Stiftung Lindenhof Bern (CH)
- IRCCS Policlinico San Donato (IT)
- Hôpital Européen (FR)
- National Heart Hospital (BG)
- Hospital Italiano La Plata (AR)
- Hôpitaux Universitaires Paris-Ouest (FR)
- Hôpital Cardiologique du Haut-Lévêque (FR)
- Chiba Cerebral and Cardiovascular Center (JP)
- Equilibrium Research (GB)
- National Taiwan University Hospital (TW)
- National Heart Institute (MY)
- Skåne University Hospital (SE)
- Hospital de Niños de la Santísima Trinidad (AR)
- Johns Hopkins Hospital (US)
- Clinics Hospital of Ribeirão Preto (BR)
- Addis Ababa University (ET)
- Monash University (AU)
- Université de Montréal (CA)
- Medical University of Vienna (AT)
- University of San Francisco (US)
- Université de Thiès (SN)
- Newcastle University (GB)
- University of Gothenburg (SE)
- Umeå University (SE)
- Stanford University (US)
- University of Lausanne (CH)
- KU Leuven (BE)
Publication Details
- Journal
- International Journal of Cardiology
- Published
- 2025-10-08
- DOI
- https://doi.org/10.1016/j.ijcard.2025.133958
- Primary Topic
- Congenital Heart Disease Studies
- Type
- article
- Field-Weighted Citation Impact
- 0.00
Funders
- Gentofte Hospital
- Fonds Wetenschappelijk Onderzoek
- Ministero della Salute
- KU Leuven
- Rigshospitalet
- Universidade do Porto
- Vlaamse regering