Jessica Rassart1, Silke Apers2, Adrienne H Kovacs3, Philip Moons4, Corina Thomet5, Werner Budts6, Junko Enomoto7, Maayke A Sluman8, Jou-Kou Wang9, Jamie L Jackson10, Paul Khairy11, Stephen C Cook12, Raghavan Subramanyan13, Luis Alday14, Katrine Eriksen15, Mikael Dellborg16, Malin Berghammer17, Bengt Johansson18, Gwen R Rempel19, Samuel Menahem20, Maryanne Caruana21, Gruschen Veldtman22, Alexandra Soufi23, Susan M Fernandes24, Kamila S White25, Edward Callus26, Shelby Kutty27, Koen Luyckx2. 1. University of Leuven, Leuven, Belgium; Research Foundation Flanders, Belgium. Electronic address: jessica.rassart@kuleuven.be. 2. University of Leuven, Leuven, Belgium. 3. University of Toronto, Toronto, Canada. 4. University of Leuven, Leuven, Belgium; University of Gothenburg, Gothenburg, Sweden. 5. University Hospital Bern, Bern, Switzerland. 6. University of Leuven, Leuven, Belgium; University Hospitals Leuven, Leuven, Belgium. 7. Chiba Cardiovascular Center, Chiba, Japan. 8. Amsterdam Medical Center, Amsterdam, The Netherlands. 9. National Taiwan University Hospital, Taipei, Taiwan. 10. Nationwide Children's Hospital, Columbus, USA. 11. Montreal Heart Institute, Montreal, Canada. 12. Adult Congenital Heart Disease Center, Helen DeVos Children's Hospital Grand Rapids, MI, USA. 13. Frontier Lifeline Hospital, Dr. K. M. Cherian Heart Foundation, Chennai, India. 14. Hospital de Niños, Córdoba, Argentina. 15. Oslo University Hospital, Oslo, Norway. 16. University of Gothenburg, Gothenburg, Sweden; Sahlgrenska University Hospital, Gothenburg, Sweden. 17. University of Gothenburg, Gothenburg, Sweden; University West, Trollhättan, Sweden. 18. University Hospital of Umeå, Umeå, Sweden. 19. University of Alberta, Edmonton, Canada. 20. Monash Medical Center, Melbourne, Australia. 21. Mater Dei Hospital, Msida, Malta. 22. Cincinnati Children's Hospital Medical Center, Cincinnati, USA. 23. Hospital Louis Pradel, Lyon, France. 24. Stanford University, Palo Alto, USA. 25. Washington University and Barnes Jewish Heart & Vascular Center, University of Missouri, Saint Louis, USA. 26. IRCCS Policlinco San Donato Hospital, Milan, Italy. 27. Children's Hospital & Medical Center, Omaha, USA.
Abstract
BACKGROUND: Illness perceptions are cognitive frameworks that patients construct to make sense of their illness. Although the importance of these perceptions has been demonstrated in other chronic illness populations, few studies have focused on the illness perceptions of adults with congenital heart disease (CHD). This study examined (1) inter-country variation in illness perceptions, (2) associations between patient characteristics and illness perceptions, and (3) associations between illness perceptions and patient-reported outcomes. METHODS: Our sample, taken from APPROACH-IS, consisted of 3258 adults with CHD from 15 different countries. Patients completed questionnaires on illness perceptions and patient-reported outcomes (i.e., quality of life, perceived health status, and symptoms of depression and anxiety). Patient characteristics included sex, age, marital status, educational level, employment status, CHD complexity, functional class, and ethnicity. Linear mixed models were applied. RESULTS: The inter-country variation in illness perceptions was generally small, yet patients from different countries differed in the extent to which they perceived their illness as chronic and worried about their illness. Patient characteristics that were linked to illness perceptions were sex, age, employment status, CHD complexity, functional class, and ethnicity. Higher scores on consequences, identity, and emotional representation, as well as lower scores on illness coherence and personal and treatment control, were associated with poorer patient-reported outcomes. CONCLUSIONS: This study emphasizes that, in order to gain a deeper understanding of patients' functioning, health-care providers should focus not only on objective indicators of illness severity such as the complexity of the heart defect, but also on subjective illness experiences.
BACKGROUND: Illness perceptions are cognitive frameworks that patients construct to make sense of their illness. Although the importance of these perceptions has been demonstrated in other chronic illness populations, few studies have focused on the illness perceptions of adults with congenital heart disease (CHD). This study examined (1) inter-country variation in illness perceptions, (2) associations between patient characteristics and illness perceptions, and (3) associations between illness perceptions and patient-reported outcomes. METHODS: Our sample, taken from APPROACH-IS, consisted of 3258 adults with CHD from 15 different countries. Patients completed questionnaires on illness perceptions and patient-reported outcomes (i.e., quality of life, perceived health status, and symptoms of depression and anxiety). Patient characteristics included sex, age, marital status, educational level, employment status, CHD complexity, functional class, and ethnicity. Linear mixed models were applied. RESULTS: The inter-country variation in illness perceptions was generally small, yet patients from different countries differed in the extent to which they perceived their illness as chronic and worried about their illness. Patient characteristics that were linked to illness perceptions were sex, age, employment status, CHD complexity, functional class, and ethnicity. Higher scores on consequences, identity, and emotional representation, as well as lower scores on illness coherence and personal and treatment control, were associated with poorer patient-reported outcomes. CONCLUSIONS: This study emphasizes that, in order to gain a deeper understanding of patients' functioning, health-care providers should focus not only on objective indicators of illness severity such as the complexity of the heart defect, but also on subjective illness experiences.
Authors: Christina E Holbein; Nicholas D Fogleman; Kevin Hommel; Silke Apers; Jessica Rassart; Philip Moons; Koen Luyckx; Maayke A Sluman; Junko Enomoto; Bengt Johansson; Hsiao-Ling Yang; Mikael Dellborg; Raghavan Subramanyan; Jamie L Jackson; Werner Budts; Adrienne H Kovacs; Stacey Morrison; Martha Tomlin; Kathy Gosney; Alexandra Soufi; Katrine Eriksen; Corina Thomet; Malin Berghammer; Luis Alday; Edward Callus; Susan M Fernandes; Maryanne Caruana; Samuel Menahem; Stephen C Cook; Gwen R Rempel; Kamila White; Paul Khairy; Shelby Kutty; Gruschen Veldtman Journal: Congenit Heart Dis Date: 2018-01-03 Impact factor: 2.007
Authors: Dirkjan Kauw; Dounya Schoormans; Gertjan Tj Sieswerda; Joost P Van Melle; Hubert W Vliegen; Arie P J Van Dijk; Mariët S Hulsbergen-Zwarts; Marco C Post; Tieneke J Ansink; Barbara J M Mulder; Berto J Bouma; Mark J Schuuring Journal: J Cardiovasc Nurs Date: 2022 Mar-Apr 01 Impact factor: 2.083
Authors: Chun-Wei Lu; Jou-Kou Wang; Hsiao-Ling Yang; Adrienne H Kovacs; Koen Luyckx; Francisco Javier Ruperti-Repilado; Alexander Van De Bruaene; Junko Enomoto; Maayke A Sluman; Jamie L Jackson; Paul Khairy; Stephen C Cook; Shanthi Chidambarathanu; Luis Alday; Erwin Oechslin; Katrine Eriksen; Mikael Dellborg; Malin Berghammer; Bengt Johansson; Andrew S Mackie; Samuel Menahem; Maryanne Caruana; Gruschen Veldtman; Alexandra Soufi; Susan M Fernandes; Kamila White; Edward Callus; Shelby Kutty; Silke Apers; Philip Moons Journal: J Am Heart Assoc Date: 2022-04-26 Impact factor: 6.106