Person-centred care in congenital heart disease: Intercountry variation in patient-reported experiences across 32 countries
  • Lykkeberg, Birgitte
  • Christensen, Anne Vinggaard
  • Kikkenborg Berg, Selina Kikkenborg
  • Larsen, Signe Holm
  • van Bulck, Liesbet V.
  • 외 54명
Citations

WEB OF SCIENCE

0
Citations

SCOPUS

0

초록

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 Elsevier B.V., All rights reserved.

키워드

ACHD careAutonomy supportCongenital heart diseasePatient-Centred carePerson-Centred carePREMsHEALTH-CAREAUTONOMY SUPPORTSATISFACTIONVERSIONLIFE
제목
Person-centred care in congenital heart disease: Intercountry variation in patient-reported experiences across 32 countries
저자
Lykkeberg, BirgitteChristensen, Anne VinggaardKikkenborg Berg, Selina KikkenborgLarsen, Signe Holmvan Bulck, Liesbet V.Goossens, EvaKovacs, Adrienne H.Luyckx, KoenLadak, Laila AkbarLèye, Mohamed C.B.O.van de Bruaene, Alexander V.Leong, Ming ChernKaneva, AnnaAmaral, Fernando Tadeu VasconcelosAraujo, John JairoSasikumar, NavaneethaGabriel, Harald M.Yadeta, DejumaWang, Jou KouEnomoto, JunkoAreias, Maria Emília GuimarãesKosmidis, DiamantisCoats, Louise E.Valente, Anne MarieMoon, Ju-ryoungLadouceur, MagalieThomet, CorinaJackson, Jamie L.Sandberg, CamillaCallus, EdwardKim, Yuli Y.Alday, Luis EduardoBredy, CharlèneSaidi, Arwa S.Reyes, Fernando BaraonaMenahem, Samuel A.de Hosson, Michèle Jeanne JefHlebowicz, JoannaChristersson, ChristinaZaidi, Ali N.Johansson, Bengt O.Andresen, BrithAmbassa, Jean ClaudeMandalenakis, ZachariasConstantine, Andrew HarryAmédro, Pascalvan Melle, Joost P.V.Cedars, Ari MichaelOrtiz, Lucía MarianelaDemir, FatmaKhairy Dr, PaulWindram, Jonathan DavidBouchardy, JudithCaruana, MaryanneJameson, Susan M.Mahadevan, Vaikom SubramanianMcGrath, Lidija B.Mwita, Julius ChachaMoons, Philip
DOI
10.1016/j.ijcard.2025.133958
발행일
2026-02-01
유형
Article
저널명
International Journal of Cardiology
444