Summary

Standardization of pediatric heart care is set up in different university medical centers, incorporating physical fitness tests and therapy, cognitive and psychological assessment as well as questionnaires.

Because treatments for congenital heart defects have significantly improved, a growing number of “children with heart disease” are continuing to grow into adulthood. This allows pediatric heart care to increasingly focus on proper monitoring of these children. For this reason, STAMINA is standardizing pediatric heart care across various university medical centers, including physical fitness testing and therapy, cognitive and psychological assessments, and questionnaires. This will allow these children to be assessed in a growing number of domains, further improving care.

Building on the insights gained from this standard care, a smart digital platform is being developed to improve physical activity in children with heart disease. Collaboration with existing eHealth initiatives, as well as with the FIT-HEART consortium from the Dutch Heart Foundation, is being sought for this platform. Qualitative research, including interviews and focus groups with healthcare professionals, children with heart disease, and parents, will be conducted in 2025. Their experiences, wishes, and needs for the platform will be explored.

Click here for more information (only in Dutch): Kinderen met een aangeboren hartafwijking: onderzoek naar fysieke activiteit | Stichting Hartekind