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An international perspective on illness identity in adults with congenital heart disease: Associations with patient characteristics, national culture and well-being

Van Laere E 1 , Luyckx K 2 , Van Bulck L 1 , Kovacs AH 3 , Goossens E 4 , Ladak LA 5 Show all authors , Leye M 6 , Van De Bruaene A 7 , Leong MC 8 , Kaneva A 9 , Manso PH 10 , Araujo JJ 11 , Sasikumar N 12 , Gabriel H 13 , Yadeta D 14 , Yang HL 15 , Enomoto J 16 , Areias ME 17 , Kosmidis D 18 , Coats L 19 , Valente AM 20 , Moon JR 21 , Ladouceur M 22 , Thomet C 23 , Jackson JL 24 , Sandberg C 25 , Johansson B 25 , Callus E 26 , Kim YY 27 , Lykkeberg B 28 , Alday L 29 , Bredy C 30 , Saidi A 31 , Reyes FB 32 , Menahem S 33 , de Hosson M 34 , Hlebowicz J 35 , Christersson C 36 , Zaidi AN 37 , Andresen B 38 , Ambassa JC 39 , Mandalenakis Z 40 , Constantine A 41 , Amedro P 42 , van Melle JP 43 , Cedars A 44 , Ortiz L 45 , Demir F 46 , Khairy P 47 , Windram J 48 , Bouchardy J 49 , Caruana M 50 , Jameson SM 51 , Mahadevan VS 52 , McGrath LB 53 , Mwita JC 54 , Moons P 55 , APPROACH-IS II consortium on behalf of the International Society for Adult Congenital Heart Disease (ISACHD)

Affiliations 

  • 1 KU Leuven, Leuven, Belgium; Research Foundation Flanders, FWO, Brussels, Belgium
  • 2 KU Leuven, Leuven, Belgium; University of the Free State, Bloemfontein, South Africa
  • 3 Equilibria Psychological Health, Toronto, Ontario, Canada
  • 4 KU Leuven, Leuven, Belgium; Center for Research and Innovation in Care (CRIC), Faculty of Medicine and Health Sciences, University of Antwerp, Antwerp, Belgium
  • 5 The Aga Khan University, Karachi, Pakistan
  • 6 University of ThiesUFR des Sciences de la santé, Thies, Senegal
  • 7 KU Leuven, Leuven, Belgium; Structural and Congenital Cardiology, University Hospitals Leuven, Leuven, Belgium
  • 8 Paediatric & Congenital Heart Centre, Institut Jantung Negara, Kuala Lumpur, Malaysia
  • 9 National Heart Hospital, Sofia, Bulgaria
  • 10 University of São Paulo Hospital, Ribeirão Preto, Brazil
  • 11 Meintegral-Clinic, Manizales, Colombia
  • 12 Amrita Institute of Medical Sciences, Kochi, Kerala, India
  • 13 Medical University of Vienna, Vienna, Austria
  • 14 Internal Medicine, School of Medicine, Addis Ababa University, Addis Ababa, Ethiopia
  • 15 National Taiwan University, Taipei, Taiwan
  • 16 Toyo University, Tokyo, Japan; Chiba Cerebral and Cardiovascular Center, Chiba, Japan
  • 17 University of Porto, Porto, Portugal; Centro Hospitalar Universitário de S. João, Porto, Portugal
  • 18 University General Hospital of Thessaloniki AHEPA First Cardiology Clinic, Thessaloniki, Greece
  • 19 Adult Congenital Heart Unit, Freeman Hospital, Newcastle upon Tyne, UK
  • 20 Cardiology, Children's Hospital Boston and Women's Hospital, Boston, MA, USA
  • 21 Cardiac Center, Samsung Medical Center, Seoul, South Korea
  • 22 Cardiology, Hopital Europeen Georges Pompidou, Paris, France; Hôpital Marie Lannelongue, Paris Saclay University, Le Plessis-Robinson, France
  • 23 Lindenhofgruppe Bern, Bern, Switzerland; Inselspital Bern, Bern University Hospital, Bern, Switzerland
  • 24 Center for Biobehavioral Health, Abigail Wexner Research Institute at Nationwide Children's Hospital, Columbus, Ohio, USA
  • 25 Umeå University, Umeå, Sweden
  • 26 Clinical Psychology Service, IRCCS Policlinico San Donato, San Donato Milanese, Milan, Italy; Department of Biomedical Sciences for Health, University of Milan, Milan, Italy
  • 27 Philadelphia Adult Congenital Heart Center, Penn Medicine and Children's Hospital of Philadelphia, Philadelphia, PA, USA
  • 28 Copenhagen University Hospital, Kobenhavn, Denmark
  • 29 Hospital de Niños, Cordoba, Argentina
  • 30 Pediatric Cardiology, Centre Hospitalier Regional Universitaire de Montpellier, Montpellier, France
  • 31 Congenital Heart Center, University of Florida, Gainesville, Florida, USA
  • 32 Pontificia Universidad Católica de Chile and Instituto Nacional del Torax Santiago, Chile
  • 33 Department of Paediatrics, School of Clinical Sciences, Monash University, Melbourne, Victoria, Australia
  • 34 Department of Adult Congenital Cardiology, Ghent University Hospital, Ghent, Belgium
  • 35 Lund University, Skåne University Hospital, Lund, Sweden
  • 36 Department of Medical Sciences, Uppsala University, Uppsala, Sweden
  • 37 Cardiology, Mount Sinai School of Medicine, New York, NY, USA
  • 38 Oslo University Hospital, Department of Cardiothoracic Surgery, Oslo, Norway
  • 39 Clinique Medical Le Jourdain, Yaoundé, Cameroon
  • 40 University of Gothenburg, Gothenburg, Sweden
  • 41 Royal Brompton and Harefield Hospitals, London, UK
  • 42 Pediatric and Congenital Cardiology, CHU de Bordeaux Hôpital Cardiologique, Pessac, France; Heart and Lung Center, Children's National Hospital, George Washington University, Washington, DC, USA
  • 43 University Medical Centre Groningen, Groningen, the Netherlands
  • 44 Johns Hopkins University, Baltimore, MD, USA
  • 45 Hospital San Juan De Dios De La Plata, Buenos Aires, Argentina
  • 46 Ege University Institute of Health Sciences, Izmir, Turkey
  • 47 Montreal Heart Institute, Université de Montréal, Montreal, Quebec, Canada
  • 48 Mazankowski Alberta Heart Institute, Edmonton, Alberta, Canada
  • 49 Service of Cardiology, Lausanne University Hospital and University of Lausanne, Lausanne, Switzerland; Hôpitaux Universitaires de Genève, Genève, Switzerland
  • 50 Department of Cardiology, Mater Dei Hospital, Msida, Malta
  • 51 Stanford University School of Medicine, Palo Alto, California, USA
  • 52 Department of Cardiology, University of California San Francisco, San Francisco, California, USA; University of Massachusetts Chan School of Medicine, Worcester, MA, United States of America
  • 53 Oregon Health & Science University, Portland, Oregon, USA
  • 54 Internal Medicine, University of Botswana, Gaborone, Botswana
  • 55 KU Leuven, Leuven, Belgium; University of Gothenburg, Gothenburg, Sweden; University of Cape Town, Cape Town, South Africa. Electronic address: philip.moons@gu.se
Int J Cardiol, 2026 Dec 15;465:134954.
PMID: 42843459 DOI: 10.1016/j.ijcard.2026.134954

Abstract

BACKGROUND: Illness identity refers to the degree to which a severe health condition is integrated into a person's sense of identity. Patients with congenital heart disease (CHD) vary in how they relate their CHD to their identity, which has implications for mental health, quality of life, and perceived health. This study explored inter-country variation in illness identity, and examined associations with patient characteristics and patient-reported outcomes in a large, international sample.

METHODS: This study utilized data from the APPROACH-IS-II project which included 8415 patients from 32 countries (collected between 2019 and 2022). Patients completed questionnaires on patient characteristics (i.e., age, sex, marital status, employment, education, ethnicity, NYHA class, and CHD complexity), illness identity, and patient-reported outcomes (i.e., depressive symptoms, anxiety, quality of life, self-perceived [mental and physical] health). National culture was included using Hofstede's cultural dimensions. Data were analyzed using multivariable generalized linear mixed models.

RESULTS: Inter-country variation was observed in the illness identity dimensions. Patient characteristics (i.e., sex, age, marital status, employment, education, NYHA class, and CHD complexity) and national culture were related to differences in how patients related their CHD to their identity. Acceptance and enrichment were related to better well-being, quality of life, and self-perceived health, while engulfment and rejection were associated with worse patient-reported outcomes.

CONCLUSIONS: Personal and contextual factors were associated with differences in the illness identity dimensions. Moreover, the present study substantiated the unique value of illness identity dimensions in explaining individual differences in well-being, quality of life, and self-perceived health in this population.

* Title and MeSH Headings from MEDLINE®/PubMed®, a database of the U.S. National Library of Medicine.

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