Treatment Effects on the Quality of Life of Patients with Congenital Heart Disease: A Retrospective Review of 1,084 Patients

Background: As survival into adulthood became standard for patients with congenital heart disease, patient-reported outcome is the main criterion to evaluate treatment. The purpose of our study was to analyze patient-reported quality of life and the objectively measured exercise capacity as peak oxygen uptake (peak VO₂) longitudinally and to assess the effects of the main different treatment options, that is, surgery, catheter intervention, drug therapy, and surveillance.

Methods and Results: Data from 1,084 patients (≥14 years, various congenital heart diseases) were reviewed, who had completed the SF-36 questionnaire on quality of life prior to a cardiopulmonary exercise test at least twice. In the 3.97 ± 2.18 years of follow-up, there was a decline in quality of life (physical and mental summary score) and peak VO₂. Patients with surgery and catheter intervention had an increase in physical summary score compared with the other treatment groups (p < 0.0001). Patients with no change in treatment reported a worse health transition at follow-up (p = 0.033). Even after performing a multivariable analysis, including also age, sex, pacer status, body mass, body height, body mass index, baseline values of the outcome variables, and follow-up duration, these effects were still significant. In the mental summary score and peak VO₂, no significant differences between the treatment groups were evident. Furthermore, there was no significant correlation between changes in peak VO₂ and changes in the physical summary score (r = 0.024, p = 0.603).

Conclusion: In adolescents and adults with congenital heart disease, exercise capacity and quality of life deteriorates independently with time. Surgery or catheter intervention can stop or even turn this deterioration at least in the physical aspects of patient-reported life quality.