Quality of Life in Adult Congenital Heart Disease

Study Questions:

What are the determinants of quality of life (QOL) in an international sample of adults with congenital heart disease (CHD)?

Methods:

A total of 4,208 adults with CHD from 15 countries were enrolled. QOL was assessed using two instruments. The linear analog scale (LAS) is a vertically oriented line that ranges from 0 (worse imaginable QOL) to 100 (best imaginable QOL). The satisfaction with life scale (SWLS) is a measure including five statements with a response scale from 1 (strongly disagree) to 7 (strongly agree) and a total of 35 points. Patient- and country-specific characteristics were applied in the analysis.

Results:

Median QOL was 80 on the LAS and 27 on the SWLS. Older age, lack of employment, no marriage history, and worse New York Heart Association functional class were associated with lower QOL (p < 0.001). Patients from Australia had the highest QOL (LAS: 82) and patients from Japan had the lowest (LAS: 72). Country-specific characteristics of happiness scores and cultural dimensions were not significantly adjusted with QOL after adjustment for patient characteristics, and explained only an additional 0.1% of the variance above and beyond patient characteristics (p = 0.l56).

Conclusions:

Overall, QOL in adults with CHD is generally good, with variation related to patient characteristics, but not country-specific characteristics.

Perspective:

The issue of QOL in adults with CHD is complex, with patients sometimes showing higher QOL than control populations. This large international study used two simple, well-validated instruments to measure QOL. A significant limitation of the study was lack of a control group, raising the question of how these results compare with what might be expected. For the SWLS, a score of 20-24 would be considered average, while a score of 30-35 is indicative of someone very highly satisfied with their life. Therefore, the SWLS score of 27 suggests relatively good QOL in this patient population. For the LAS, the current results are consistent with previously reported values for both adults with CHD and controls. For our readers from the United States, this subgroup was on the higher end of the range, with an estimate of 80.4 on the LAS. Future research will need to focus on the subset of patients with lower QOL to identify interventions, which may lead to improvement.

Clinical Topics: Congenital Heart Disease and Pediatric Cardiology, Heart Failure and Cardiomyopathies, Congenital Heart Disease, Acute Heart Failure

Keywords: Adult, Employment, Happiness, Heart Defects, Congenital, Heart Failure, Marriage, Personal Satisfaction, Population Groups, Quality of Life


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