TY - JOUR
T1 - Illness perceptions in adult congenital heart disease
T2 - A multi-center international study
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
N1 - Publisher Copyright:
© 2017 Elsevier B.V.
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
U2 - 10.1016/j.ijcard.2017.06.072
DO - 10.1016/j.ijcard.2017.06.072
M3 - Journal Article
C2 - 28669511
AN - SCOPUS:85021316212
SN - 0167-5273
VL - 244
SP - 130
EP - 138
JO - International Journal of Cardiology
JF - International Journal of Cardiology
ER -