Illness perceptions in adult congenital heart disease: A multi-center international studyUniversity Hospital Bern, Bern, Switzerland..
University of Leuven, Leuven, Belgium; University Hospitals Leuven, Leuven, Belgium.
Chiba Cardiovascular Center, Chiba, Japan..
Amsterdam Medical Center, Amsterdam, The Netherlands..
National Taiwan University Hospital, Taipei, Taiwan..
Nationwide Children's Hospital, Columbus, USA.
Montreal Heart Institute, Montreal, Canada..
Adult Congenital Heart Disease Center, Helen DeVos Children's Hospital Grand Rapids, MI, USA..
Frontier Lifeline Hospital, Dr. K. M. Cherian Heart Foundation, Chennai, India..
Hospital de Niños, Córdoba, Argentina..
Oslo University Hospital, Oslo, Norway..
University of Gothenburg, Gothenburg, Sweden; Sahlgrenska University Hospital, Gothenburg, Sweden.
University Hospital of Umeå, Umeå, Sweden.
University of Alberta, Edmonton, Canada.
Monash Medical Center, Melbourne, Australia..
Mater Dei Hospital, Msida, Malta.
Cincinnati Children's Hospital Medical Center, Cincinnati, USA..
Hospital Louis Pradel, Lyon, France..
Stanford University, Palo Alto, USA.
Washington University and Barnes Jewish Heart & Vascular Center, University of Missouri, Saint Louis, USA..
IRCCS Policlinco San Donato Hospital, Milan, Italy..
Children's Hospital & Medical Center, Omaha, USA.
University of Leuven, Leuven, Belgium.
Show others and affiliations
2017 (English)In: International Journal of Cardiology, ISSN 0167-5273, E-ISSN 1874-1754, Vol. 244, p. 130-138Article in journal (Refereed) Published
Abstract [en]
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.
Place, publisher, year, edition, pages
2017. Vol. 244, p. 130-138
Keywords [en]
Heart defects, congenital, Illness perceptions, International cooperation, multilevel analysis, Psychosocial care
National Category
Nursing
Research subject
NURSING AND PUBLIC HEALTH SCIENCE, Nursing science
Identifiers
URN: urn:nbn:se:hv:diva-11386DOI: 10.1016/j.ijcard.2017.06.072ISI: 000406943600024PubMedID: 28669511Scopus ID: 2-s2.0-85021316212OAI: oai:DiVA.org:hv-11386DiVA, id: diva2:1135972
Conference
APPROACH-IS consortium and the International Society for Adult Congenital Heart Disease (ISACHD).
Funder
Swedish Heart Lung Foundation, 20130607
Note
Funders KU Leuven (Belgium), OT/11/033; Cardiac Children's Foundation (Taiwan), CCF2013_02; University of Gothenburg Centre for Person-centered Care
2017-08-242017-08-242019-02-19Bibliographically approved