CHSTRONG KIDS Survey

The CHSTRONG KIDS survey asks questions to gather information from parents and caregivers of children with heart defects. CHSTRONG stands for "Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG."

CHSTRONG KIDS was based on a similar survey  conducted with adults living with a congenital heart defect (CHD). The information from the CHSTRONG KIDS survey is helping MDH and the CHSTRONG KIDS Teams at CDC, Massachusetts Department of Public Health, and Boston University School of Public Health identify important issues for children and adolescents with heart defects and their parents or caregivers. Recruitment for the CHSTRONG KIDS survey began in early 2024 and finished in April 2025. The project team is now turning to analysis of the information provided by caregivers of kids with CHDs. Findings will be examined and disseminated widely to be used to improve the lives of families with individuals with heart defects.  

Page contents

• Thank you
• What questions were included in the survey?
• CHDs that qualifed for the CHSTRONG KIDS survey.
• Contact information

Thank you!

Thank you to everyone who participated in CHSTRONG KIDS! Your experiences are important. The information you provided can help us understand what children with heart defects and their families need. This information may help families of children born with heart defects plan for the future. It may also inform and guide health systems to better support families like yours. 

What questions were included in the survey?

This survey asked questions about both the caregiver and the child born with CHD regarding their healthcare use, education, social experiences, and quality of life. Caregiver experiences were included because little is known about the long-term outcomes and quality of life of children born with heart defects or the needs of their caregivers.  

CHDs that qualify for the CHSTRONG KIDS survey

• Aortic valve stenosis
• Coarctation of the aorta
• Common truncus
• Double outlet right ventricle
• Epstein’s anomaly
• Endocardial cushion defect
• Hypoplastic left heart syndrome
• Pulmonary valve atresia
• Pulmonary valve stenosis
• Single ventricle
• Total anomalous pulmonary venous return
• Tetralogy of Fallot
• Transposition of the great arteries (TGA)
• Tricuspid valve atresia

Still have questions?

Please contact health.cyshn@state.mn.us or call 651-201-3650 for more information.