Shifts in Exercise Capacity Are Not Reported Adequately in Patients with Congenital Heart Disease

Objective. In cross-sectional studies, self-reported health status and quality of life have only poorly correlated with objective exercise capacity in patients with congenital heart disease (CHD). We tested the hypothesis whether longitudinal changes in exercise ability are related to changes in self-reported quality of life. Patients and Methods. One hundred eighty-two patients (79 female, 103 male, age 1470 years) with various congenital heart defects were investigated twice. Every time, they completed the SF-36 quality of life survey and performed a symptom-limited cardiopulmonary exercise test. Between the two tests, 32 patients had open heart surgery, 10 had a catheter intervention, 48 patients had a medication change, and 92 had no changes in their management for at least 6 months. Results. Patients were classified into three groups. Peak oxygen uptake increased by more than 10% in 43 patients; in 84, patients it did not change substantially (+/- 10%); and in 55 patients, it declined by more than 10%. Comparing the three groups, the changes in any of the life quality scales did not differ significantly. Even in self-reported physical functioning, we could not find any differences (KruskalWallis test, P= .563). Conclusions. In patients with CHD, there was no detectable relation of changes in exercise capacity and changes in self-reported health status or quality of life.