Illness perceptions in adult congenital heart disease: A multi-center international study

on behalf of the APPROACH-IS consortium and the International Society for Adult Congenital Heart Disease (ISACHD)

Research output: Contribution to journalArticle

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.

Original languageEnglish
Pages (from-to)130-138
Number of pages9
JournalInternational Journal of Cardiology
Volume244
DOIs
Publication statusPublished - Oct 1 2017

Fingerprint

Heart Diseases
Chronic Disease
Marital Status
Sex Characteristics
Health Personnel
Health Status
Linear Models
Anxiety
Quality of Life
Depression
Population
Patient Reported Outcome Measures

Keywords

  • Heart defects, congenital
  • Illness perceptions
  • International cooperation, multilevel analysis
  • Psychosocial care

ASJC Scopus subject areas

  • Cardiology and Cardiovascular Medicine

Cite this

on behalf of the APPROACH-IS consortium and the International Society for Adult Congenital Heart Disease (ISACHD) (2017). Illness perceptions in adult congenital heart disease: A multi-center international study. International Journal of Cardiology, 244, 130-138. https://doi.org/10.1016/j.ijcard.2017.06.072

Illness perceptions in adult congenital heart disease : A multi-center international study. / on behalf of the APPROACH-IS consortium and the International Society for Adult Congenital Heart Disease (ISACHD).

In: International Journal of Cardiology, Vol. 244, 01.10.2017, p. 130-138.

Research output: Contribution to journalArticle

on behalf of the APPROACH-IS consortium and the International Society for Adult Congenital Heart Disease (ISACHD) 2017, 'Illness perceptions in adult congenital heart disease: A multi-center international study', International Journal of Cardiology, vol. 244, pp. 130-138. https://doi.org/10.1016/j.ijcard.2017.06.072
on behalf of the APPROACH-IS consortium and the International Society for Adult Congenital Heart Disease (ISACHD). Illness perceptions in adult congenital heart disease: A multi-center international study. International Journal of Cardiology. 2017 Oct 1;244:130-138. https://doi.org/10.1016/j.ijcard.2017.06.072
on behalf of the APPROACH-IS consortium and the International Society for Adult Congenital Heart Disease (ISACHD). / Illness perceptions in adult congenital heart disease : A multi-center international study. In: International Journal of Cardiology. 2017 ; Vol. 244. pp. 130-138.
@article{e5397f5065e64526bbfe0d58a21e3407,
title = "Illness perceptions in adult congenital heart disease: A multi-center international study",
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.",
keywords = "Heart defects, congenital, Illness perceptions, International cooperation, multilevel analysis, Psychosocial care",
author = "{on behalf of the APPROACH-IS consortium and the International Society for Adult Congenital Heart Disease (ISACHD)} and Jessica Rassart and Silke Apers and Kovacs, {Adrienne H.} and Philip Moons and Corina Thomet and Werner Budts and Junko Enomoto and Sluman, {Maayke A.} and Wang, {Jou Kou} and Jackson, {Jamie L.} and Paul Khairy and Cook, {Stephen C.} and Raghavan Subramanyan and Luis Alday and Katrine Eriksen and Mikael Dellborg and Malin Berghammer and Bengt Johansson and Rempel, {Gwen R.} and Samuel Menahem and Maryanne Caruana and Gruschen Veldtman and Alexandra Soufi and Fernandes, {Susan M.} and White, {Kamila S.} and Edward Callus and Shelby Kutty and Koen Luyckx",
year = "2017",
month = "10",
day = "1",
doi = "10.1016/j.ijcard.2017.06.072",
language = "English",
volume = "244",
pages = "130--138",
journal = "International Journal of Cardiology",
issn = "0167-5273",
publisher = "Elsevier Ireland Ltd",

}

TY - JOUR

T1 - Illness perceptions in adult congenital heart disease

T2 - A multi-center international study

AU - on behalf of the APPROACH-IS consortium and the International Society for Adult Congenital Heart Disease (ISACHD)

AU - Rassart, Jessica

AU - Apers, Silke

AU - Kovacs, Adrienne H.

AU - Moons, Philip

AU - Thomet, Corina

AU - Budts, Werner

AU - Enomoto, Junko

AU - Sluman, Maayke A.

AU - Wang, Jou Kou

AU - Jackson, Jamie L.

AU - Khairy, Paul

AU - Cook, Stephen C.

AU - Subramanyan, Raghavan

AU - Alday, Luis

AU - Eriksen, Katrine

AU - Dellborg, Mikael

AU - Berghammer, Malin

AU - Johansson, Bengt

AU - Rempel, Gwen R.

AU - Menahem, Samuel

AU - Caruana, Maryanne

AU - Veldtman, Gruschen

AU - Soufi, Alexandra

AU - Fernandes, Susan M.

AU - White, Kamila S.

AU - Callus, Edward

AU - Kutty, Shelby

AU - Luyckx, Koen

PY - 2017/10/1

Y1 - 2017/10/1

N2 - 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.

AB - 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.

KW - Heart defects, congenital

KW - Illness perceptions

KW - International cooperation, multilevel analysis

KW - Psychosocial care

UR - http://www.scopus.com/inward/record.url?scp=85021316212&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=85021316212&partnerID=8YFLogxK

U2 - 10.1016/j.ijcard.2017.06.072

DO - 10.1016/j.ijcard.2017.06.072

M3 - Article

AN - SCOPUS:85021316212

VL - 244

SP - 130

EP - 138

JO - International Journal of Cardiology

JF - International Journal of Cardiology

SN - 0167-5273

ER -