Person-centred care in congenital heart disease: Intercountry variation in patient-reported experiences across 32 countries
(2026) In International Journal of Cardiology 444.- Abstract
- Introduction: 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... (More)
- Introduction: 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. © 2025 The Authors (Less)
Please use this url to cite or link to this publication:
https://lup.lub.lu.se/record/1fed5047-5d9b-452b-88d6-1f050bacded3
- author
- Lykkeberg, B. ; Hlebowicz, J. LU and Moons, P.
- author collaboration
- organization
- publishing date
- 2026
- type
- Contribution to journal
- publication status
- published
- subject
- keywords
- ACHD care, Autonomy support, Congenital heart disease, Patient-Centred care, Person-Centred care, PREMs, Adolescent, Adult, Cross-Sectional Studies, Female, Heart Defects, Congenital, Humans, Internationality, Male, Middle Aged, Patient Reported Outcome Measures, Patient-Centered Care, Surveys and Questionnaires, Young Adult, adult, Article, congenital heart disease, cross-sectional study, female, health care system, human, Likert scale, major clinical study, male, New York Heart Association class, person centered care, questionnaire, adolescent, clinical trial, congenital heart malformation, diagnosis, epidemiology, international cooperation, middle aged, multicenter study, patient-reported outcome, psychology, therapy, young adult
- in
- International Journal of Cardiology
- volume
- 444
- article number
- 133958
- publisher
- Elsevier
- external identifiers
-
- scopus:105020767701
- ISSN
- 0167-5273
- DOI
- 10.1016/j.ijcard.2025.133958
- language
- English
- LU publication?
- yes
- id
- 1fed5047-5d9b-452b-88d6-1f050bacded3
- date added to LUP
- 2026-03-24 08:10:49
- date last changed
- 2026-03-24 08:11:33
@article{1fed5047-5d9b-452b-88d6-1f050bacded3,
abstract = {{Introduction: 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. © 2025 The Authors}},
author = {{Lykkeberg, B. and Hlebowicz, J. and Moons, P.}},
issn = {{0167-5273}},
keywords = {{ACHD care; Autonomy support; Congenital heart disease; Patient-Centred care; Person-Centred care; PREMs; Adolescent; Adult; Cross-Sectional Studies; Female; Heart Defects, Congenital; Humans; Internationality; Male; Middle Aged; Patient Reported Outcome Measures; Patient-Centered Care; Surveys and Questionnaires; Young Adult; adult; Article; congenital heart disease; cross-sectional study; female; health care system; human; Likert scale; major clinical study; male; New York Heart Association class; person centered care; questionnaire; adolescent; clinical trial; congenital heart malformation; diagnosis; epidemiology; international cooperation; middle aged; multicenter study; patient-reported outcome; psychology; therapy; young adult}},
language = {{eng}},
publisher = {{Elsevier}},
series = {{International Journal of Cardiology}},
title = {{Person-centred care in congenital heart disease: Intercountry variation in patient-reported experiences across 32 countries}},
url = {{http://dx.doi.org/10.1016/j.ijcard.2025.133958}},
doi = {{10.1016/j.ijcard.2025.133958}},
volume = {{444}},
year = {{2026}},
}