Who was in the study?

Children and young adults that were enrolled in the Fontan 1 Cross-Sectional study, or the Fontan 2 study.

What happened during the study?

Participants were asked for an echocardiogram, and exercise test, and a blood sample. Depending on a participant’s age, the participant or the participant and their parents filled out questionnaires that asked about physical, emotional, and social aspects of health and quality of life, living situation education, work outside the home, and other factors that might affect medical care, like health insurance coverage. Finally, participant medical records were reviewed to obtain information about surgeries, tests, time spent in the hospital, medicine taken, and services received, like physical or speech therapy.

What were the results of the study?

In this longitudinal study, we found that there was a decrease in exercise performance over time, which was associated with poorer functional health status at follow-up. There was also an increase in the number of participants undergoing interventions and suffering health complications over time.

The PHN is grateful to all of the families who participated in this study. The results from this study will help us to design future studies to learn more about helping children who had Fontan surgery live healthier lives.