Physical activity restrictions for children after the Fontan operation: disagreement between parent, cardiologist, and medical record reports.

Background: Physical activity is important for the health of children after the Fontan procedure. Parents uncertain about physical activity have children who are more sedentary. To understand parent uncertainty, we examined agreement regarding activity restrictions from parents, cardiologists, and medical charts.

Methods: Activity restriction information for 64 children (25 female), 6 to 11 years, with a Fontan circulation was obtained via cardiologist and parent questionnaire. Each child's medical chart was reviewed for relevant physical activity information. kappa Statistics calculated agreement between sources beyond chance.

Results: Cardiologist, parent, and medical chart reports of the child's activity restrictions often disagree. Regardless of the cardiologist reported restrictions, 70% of parents reported that their child's activity was restricted (kappa = 0.04, P = .25). Parents and cardiologists report the same body contact restrictions (kappa = 0.16) but differ for exertion and competition (kappa < .05) restrictions. Medical charts reflect competitive sport (kappa = 0.26) but not body contact or exertion restrictions.

Conclusions: Parent feelings of uncertainty about physical activity are supported by these results indicating that reports of activity restrictions after the Fontan procedure vary significantly by source. Parent and cardiologist reports agree only for body contact restrictions due to anticoagulation therapy. Exertion and body contact restrictions are not reflected in clinic letters to primary care providers. Ensuring that activity restrictions are accurately conveyed will enable parents and primary care providers to confidently encourage the active lifestyles that are so important for these children.