Is the severity of congenital heart disease associated with the quality of life and perceived health of adult patients?

Abstract

Objective: To explore whether the severity of congenital heart disease is associated with the quality of life and perceived health status of adult patients. Design: Descriptive, cross sectional study. Setting: Adult congenital heart disease programme in one tertiary care centre in Belgium. Patients: 629 patients (378 men, 251 women) with a median age of 24 years. Main outcome measures: Disease severity was operationalised in terms of initial diagnosis (classification of Task Force 1 of the 32nd Bethesda Conference), illness course (disease severity index), and current functional status (New York Heart Association (NYHA) class, ability index, congenital heart disease functional index, and left ventricular ejection fraction). Quality of life was measured by a linear analogue scale, the satisfaction with life scale, and the schedule for evaluation of individual quality of life. Perceived health status was also assessed with a linear analogue scale. Results: Scores derived from the disease severity classification systems were weakly negatively associated with quality of life and health status, ranging from 20.05 to 20.27. The NYHA functional class and ability index were consistently associated with quality of life and perceived health. Conclusions: This study showed that the severity of congenital heart disease is marginally associated with patients' quality of life and perceived health. Functional status was more related to patients' assessment of their quality of life than was the initial diagnosis or illness course.

Negative Effect of Aging on Psychosocial Functioning of Adults With Congenital Heart Disease

“…Furthermore, anxiety in Tables 1,3. Aging in ACHD and psychological functioning were much more influenced by their current physical functional status, such as NYHA class, than by their initial diagnosis, 31 and this finding was supported by our study. Furthermore, as previously mentioned, most ACHD patients regard their health condition as the main factor contributing to their QOL with age.…”

Individual quality of life in adults with congenital heart disease: a paradigm shift

“…This is in line with the finding that the quality of life in our patient sample was only marginally associated with the severity of the heart defect. 33 It can therefore be assumed that patients with severe conditions do not necessarily consider other aspects of life as significant.…”

Worsening in oxygen saturation and exercise capacity predict adverse outcome in patients with Eisenmenger syndrome

“…However, Eisenmenger patients often report a better than expected perceived health and it has been shown that there is a lack of consistency in classification between clinicians [37,38]. Nevertheless, NYHA remains a powerful prognostic tool even in Eisenmenger patients as it is the often the only parameter evaluating exercise capacity [37].…”