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 explored how patient characteristics and the country in which patients reside, shape the way they think about their illness, and how patients’ illness perceptions relate to their physical and emotional functioning. Methods. Our sample, taken from APPROACH-IS, consisted of 3,352 adults with CHD from 15 different countries. Patients completed questionnaires on illness perceptions, physical functioning, quality of life, and symptoms of depression and anxiety. Linear mixed models were applied. Results. Female sex, older age, lack of employment, no marriage history, greater CHD complexity, and poorer New York Heart Association functional class were associated with more negative illness perceptions. 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. After controlling for patient characteristics, higher scores on consequences, identity, concern, and emotional representation, as well as lower scores on illness coherence and personal and treatment control, predicted poorer physical and emotional functioning. Conclusions. This study emphasizes the importance of understanding the illness perceptions of adults with CHD, as these perceptions were related to important health outcomes. The use of psycho-educational interventions to identify and modify negative illness perceptions should be further explored.