Person-centred care in congenital heart disease: Intercountry variation in patient-reported experiences across 32 countries

Birgitte Lykkeberg; Anne Vinggaard Christensen; Selina Kikkenborg Berg; Signe Holm Larsen; Liesbet Van Bulck; Eva Goossens; Adrienne H Kovacs; Koen Luyckx; Laila Akbar Ladak; Mohamed Leye; Alexander Van De Bruaene; Ming Chern Leong; Anna Kaneva; Ernando Amaral; John Jairo Araujo; Navaneetha Sasikumar; Harald Gabriel; Dejuma Yadeta Goshu; Jou-Kou Wang; Junko Enomoto; Maria Emília Areias; Diamantis Kosmidis; Louise Coats; Anne Marie Valente; Ju Ryoung Moon; Magalie Ladouceur; Corina Thomet; Jamie L Jackson; Camilla Sandberg; Edward Callus; Yuli Y Kim; Luis Alday; Charlene Bredy; Arwa Saidi; Fernando Baraona Reyes; Samuel Menahem; Michèle de Hosson; Joanna Hlebowicz; Christina Christersson; Ali Zaidi; Bengt Johansson; Brith Andresen; Jean-Claude Ambassa; Zacharias Mandalenakis; Andrew Constantine; Pascal Amedro; Joost P Van Melle; Ari Cedars; Lucia Ortiz; Philip Moons; APPROACH-IS II consortium, on behalf of the International Society for Adults Congenital Heart Disease (ISACHD)

doi:10.1016/j.ijcard.2025.133958

Person-centred care in congenital heart disease: Intercountry variation in patient-reported experiences across 32 countries

Birgitte Lykkeberg^*, Anne Vinggaard Christensen, Selina Kikkenborg Berg, Signe Holm Larsen, Liesbet Van Bulck, Eva Goossens, Adrienne H Kovacs, Koen Luyckx, Laila Akbar Ladak, Mohamed Leye, Alexander Van De Bruaene, Ming Chern Leong, Anna Kaneva, Ernando Amaral, John Jairo Araujo, Navaneetha Sasikumar, Harald Gabriel, Dejuma Yadeta Goshu, Jou-Kou Wang, Junko EnomotoMaria Emília Areias, Diamantis Kosmidis, Louise Coats, Anne Marie Valente, Ju Ryoung Moon, Magalie Ladouceur, Corina Thomet, Jamie L Jackson, Camilla Sandberg, Edward Callus, Yuli Y Kim, Luis Alday, Charlene Bredy, Arwa Saidi, Fernando Baraona Reyes, Samuel Menahem, Michèle de Hosson, Joanna Hlebowicz, Christina Christersson, Ali Zaidi, Bengt Johansson, Brith Andresen, Jean-Claude Ambassa, Zacharias Mandalenakis, Andrew Constantine, Pascal Amedro, Joost P Van Melle, Ari Cedars, Lucia Ortiz, Philip Moons, APPROACH-IS II consortium, on behalf of the International Society for Adults Congenital Heart Disease (ISACHD)

^*Corresponding author for this work

Department of Cardiology

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.

Original language	English
Article number	133958
Journal	International Journal of Cardiology
Volume	444
ISSN	0167-5273
DOIs	https://doi.org/10.1016/j.ijcard.2025.133958
Publication status	Published - 1 Feb 2026

Keywords

Adolescent
Adult
Cross-Sectional Studies
Female
Heart Defects, Congenital/therapy
Humans
Internationality
Male
Middle Aged
Patient Reported Outcome Measures
Patient-Centered Care/standards
Surveys and Questionnaires
Young Adult
PREMs
Congenital heart disease
Person-Centred care
Patient-Centred care
ACHD care
Autonomy support

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Lykkeberg, B., Christensen, A. V., Berg, S. K., Larsen, S. H., Van Bulck, L., Goossens, E., Kovacs, A. H., Luyckx, K., Ladak, L. A., Leye, M., Van De Bruaene, A., Leong, M. C., Kaneva, A., Amaral, E., Araujo, J. J., Sasikumar, N., Gabriel, H., Goshu, D. Y., Wang, J.-K., ... APPROACH-IS II consortium, on behalf of the International Society for Adults Congenital Heart Disease (ISACHD) (2026). Person-centred care in congenital heart disease: Intercountry variation in patient-reported experiences across 32 countries. International Journal of Cardiology, 444, Article 133958. https://doi.org/10.1016/j.ijcard.2025.133958

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, E, 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, Moons, P & APPROACH-IS II consortium, on behalf of the International Society for Adults Congenital Heart Disease (ISACHD) 2026, 'Person-centred care in congenital heart disease: Intercountry variation in patient-reported experiences across 32 countries', International Journal of Cardiology, vol. 444, 133958. https://doi.org/10.1016/j.ijcard.2025.133958

@article{cb6fdbdfa92546c1b7123696005c640b,

title = "Person-centred care in congenital heart disease: Intercountry variation in patient-reported experiences across 32 countries",

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.",

keywords = "Adolescent, Adult, Cross-Sectional Studies, Female, Heart Defects, Congenital/therapy, Humans, Internationality, Male, Middle Aged, Patient Reported Outcome Measures, Patient-Centered Care/standards, Surveys and Questionnaires, Young Adult, PREMs, Congenital heart disease, Person-Centred care, Patient-Centred care, ACHD care, Autonomy support",

author = "Birgitte Lykkeberg and Christensen, \{Anne Vinggaard\} and Berg, \{Selina Kikkenborg\} and Larsen, \{Signe Holm\} and \{Van Bulck\}, Liesbet and Eva Goossens and Kovacs, \{Adrienne H\} and Koen Luyckx and Ladak, \{Laila Akbar\} and Mohamed Leye and \{Van De Bruaene\}, Alexander and Leong, \{Ming Chern\} and Anna Kaneva and Ernando Amaral and Araujo, \{John Jairo\} and Navaneetha Sasikumar and Harald Gabriel and Goshu, \{Dejuma Yadeta\} and Jou-Kou Wang and Junko Enomoto and Areias, \{Maria Em{\'i}lia\} and Diamantis Kosmidis and Louise Coats and Valente, \{Anne Marie\} and Moon, \{Ju Ryoung\} and Magalie Ladouceur and Corina Thomet and Jackson, \{Jamie L\} and Camilla Sandberg and Edward Callus and Kim, \{Yuli Y\} and Luis Alday and Charlene Bredy and Arwa Saidi and Reyes, \{Fernando Baraona\} and Samuel Menahem and \{de Hosson\}, Mich{\`e}le and Joanna Hlebowicz and Christina Christersson and Ali Zaidi and Bengt Johansson and Brith Andresen and Jean-Claude Ambassa and Zacharias Mandalenakis and Andrew Constantine and Pascal Amedro and \{Van Melle\}, \{Joost P\} and Ari Cedars and Lucia Ortiz and Philip Moons and \{APPROACH-IS II consortium, on behalf of the International Society for Adults Congenital Heart Disease (ISACHD)\}",

note = "Copyright {\textcopyright} 2025. Published by Elsevier B.V.",

year = "2026",

month = feb,

day = "1",

doi = "10.1016/j.ijcard.2025.133958",

language = "English",

volume = "444",

journal = "International Journal of Cardiology",

issn = "0167-5273",

publisher = "Elsevier Ireland Ltd",

}

TY - JOUR

T1 - Person-centred care in congenital heart disease

T2 - Intercountry variation in patient-reported experiences across 32 countries

AU - Lykkeberg, Birgitte

AU - Christensen, Anne Vinggaard

AU - Berg, Selina Kikkenborg

AU - Larsen, Signe Holm

AU - Van Bulck, Liesbet

AU - Goossens, Eva

AU - Kovacs, Adrienne H

AU - Luyckx, Koen

AU - Ladak, Laila Akbar

AU - Leye, Mohamed

AU - Van De Bruaene, Alexander

AU - Leong, Ming Chern

AU - Kaneva, Anna

AU - Amaral, Ernando

AU - Araujo, John Jairo

AU - Sasikumar, Navaneetha

AU - Gabriel, Harald

AU - Goshu, Dejuma Yadeta

AU - Wang, Jou-Kou

AU - Enomoto, Junko

AU - Areias, Maria Emília

AU - Kosmidis, Diamantis

AU - Coats, Louise

AU - Valente, Anne Marie

AU - Moon, Ju Ryoung

AU - Ladouceur, Magalie

AU - Thomet, Corina

AU - Jackson, Jamie L

AU - Sandberg, Camilla

AU - Callus, Edward

AU - Kim, Yuli Y

AU - Alday, Luis

AU - Bredy, Charlene

AU - Saidi, Arwa

AU - Reyes, Fernando Baraona

AU - Menahem, Samuel

AU - de Hosson, Michèle

AU - Hlebowicz, Joanna

AU - Christersson, Christina

AU - Zaidi, Ali

AU - Johansson, Bengt

AU - Andresen, Brith

AU - Ambassa, Jean-Claude

AU - Mandalenakis, Zacharias

AU - Constantine, Andrew

AU - Amedro, Pascal

AU - Van Melle, Joost P

AU - Cedars, Ari

AU - Ortiz, Lucia

AU - Moons, Philip

AU - APPROACH-IS II consortium, on behalf of the International Society for Adults Congenital Heart Disease (ISACHD)

PY - 2026/2/1

Y1 - 2026/2/1

N2 - 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.

AB - 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.

KW - Adolescent

KW - Adult

KW - Cross-Sectional Studies

KW - Female

KW - Heart Defects, Congenital/therapy

KW - Humans

KW - Internationality

KW - Male

KW - Middle Aged

KW - Patient Reported Outcome Measures

KW - Patient-Centered Care/standards

KW - Surveys and Questionnaires

KW - Young Adult

KW - PREMs

KW - Congenital heart disease

KW - Person-Centred care

KW - Patient-Centred care

KW - ACHD care

KW - Autonomy support

UR - https://www.scopus.com/pages/publications/105020767701

U2 - 10.1016/j.ijcard.2025.133958

DO - 10.1016/j.ijcard.2025.133958

M3 - Journal article

C2 - 41067646

SN - 0167-5273

VL - 444

JO - International Journal of Cardiology

JF - International Journal of Cardiology

M1 - 133958

ER -

Person-centred care in congenital heart disease: Intercountry variation in patient-reported experiences across 32 countries

Abstract

Keywords

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