This first follow-up to the Fontan study looked at how children and adolescents with single ventricle heart defects who participated in the Fontan Study were doing six years later.
This follow-up aimed to learn how these children and young adults, who were now between the ages of 12 and 25 years, had done since the first study. The study began in November 2009 and all children who were enrolled in the original Fontan study were invited to participate.
Participants were followed for over 7 years, on average, after the Fontan Cross-Sectional study.
The overall risk of death/transplant was 5% for those in this study.
Over the follow-up period, a statistically significant but small and clinically unimportant decline was noted in Physical Functioning.
The things we learned may not apply to every child. The findings reflect those for all 427 people who participated; parents of only 245 children and adolescents completed the CHQ at two time points. Individual results varied quite a bit.
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.
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