Reduced health-related quality of life in older patients with congenital heart disease: A cross sectional study in 2360 patients

Objective Health-related quality of life questionnaires are frequently used to involve patients' impressions and feelings in the outcome evaluation. In patients with congenital heart disease (CHD) methodological heterogeneities, assessment in different age and diagnostic groups led to controversial findings. This study aims to give a comprehensive answer to the health-related quality of life in patients with CHD. Patients and methods From July 2001 to June 2013, 2360 patients (1058 female, 28.6 ± 11.2 years, range 14-75 years) with various kinds of CHD underwent a quality of life assessment with the SF-36 questionnaire and underwent a cardiopulmonary exercise test as part of their routine follow-up. Results Physical component summary score (PCS) develops from 96.1 %predicted in patients younger than 20 years, to 96.2 %predicted in patients aged 20 to 30 years, 92.3 %predicted in patients aged 30 to 40 years, and 92.6 %predicted in patients 40 years or older (r = -.114; p <.001). The decline was more prominent in the mental component summary score (MCS) declining from 104.1 %predicted in patients younger than 20 years, to 103.4 %predicted, 99.9 %predicted, and 97.5 %predicted (r = -.132; p <.001). Exercise capacity was impaired with 80.1 ± 23.0 %predicted and also declined slowly with age (r = -.084; p <.001). Conclusions Health-related quality of life in patients with CHD is progressively reduced in older age-groups. The decline is small, but more prominent in the mental components. This should be considered in the interpretation of studies, and strategies have to be developed to reduce this effect in future.