Journal article

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


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Author list: Birgitte Lykkeberg a,v,*
, Anne Vinggaard Christensen b
, Selina Kikkenborg Berg a
,
Signe Holm Larsen c
, Liesbet Van Bulck d,bj, Eva Goossens d,e
, Adrienne H. Kovacsf
,
Koen Luyckx d,g
, Laila Akbar Ladak h
, Mohamed Leye i
, Alexander Van De Bruaene d,j
,
Ming Chern Leong k
, Anna Kaneva l
, Fernando Amaral m, John Jairo Araujo n
,
Navaneetha Sasikumar o
, Harald Gabriel p
, Dejuma Yadeta Goshu q
, Jou-Kou Wang r
,
Junko Enomoto s,t
, Maria Emília Areias u
, Diamantis Kosmidis w, Louise Coats x
,
Anne Marie Valente y
, Ju Ryoung Moon z
, Magalie Ladouceur aa,ab,
Corina Thomet ac, Jamie L. Jackson ad, Camilla Sandberg bm,
Edward Callus af,ag, Yuli Y. Kim ah, Luis Alday ai, Charlene Bredy aj, Arwa Saidi ak,
Fernando Baraona Reyes al, Samuel Menahem am,
Mich`ele de Hosson an, Joanna Hlebowicz ao, Christina Christersson ap, Ali Zaidi aq,
Bengt Johansson ae, Brith Andresen ar, Jean-Claude Ambassa as,
Zacharias Mandalenakis at, Andrew Constantine au, Pascal Amedro av, Joost P. Van Melle aw,
Ari Cedars ax, Lucia Ortiz ay, Fatma Demir az, Paul Khairy ba, Jonathan Windram bb,
Judith Bouchardy bc,ac, Maryanne Caruana bd, Susan M. Jameson be, Vaikom S. Mahadevan bf,bg,
Lidija B. McGrath bh, Julius Chacha Mwita bi, Philip Moons d,bk,bl, the APPROACH-IS II
consortium, on behalf of the International Society for Adults Congenital Heart Disease (ISACHD)

Publication year: 2025

Journal: International Journal of Cardiology

Volume number: October 8

Start page: 133958

End page: 133966

Number of pages: 9

ISSN: 0167-5273

eISSN: 1874-1754.



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


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Last updated on 2025-04-11 at 11:35