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

• What questions were included in the survey?
• I received the CHSTRONG KIDS Survey. Should I fill it out?
  • Do I have to complete the survey?
  • How did you get my contact information?
• I have two children with a CHD. Would I have gotten a survey for each child?
• CHDs that qualifed for the CHSTRONG KIDS survey.
• Contact information

What questions are 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.

Why were caregiver experiences included?

Little is known about the long-term outcomes and quality of life of children born with heart defects or the needs of their caregivers. The experiences of caregivers help inform our understanding of what children with heart defects and their families need. This information may help families of children born with a heart defect plan for the future. It may also inform and guide health systems to better support families.

I received the CHSTRONG KIDS Survey. Should I fill it out?

Survey mailings began in February 2024 and the final mailings were sent by the end of February 2025. Completed surveys had to be received by April 30, 2025 to be included in the study. Children and adolescents with heart defects; parents and caregivers of children with heart defects; healthcare providers; and public health professionals will benefit from CHSTRONG KIDS findings.  

The survey was estimated to take about 20 minutes to complete. As a thank you, we sent each family a $5 gift card to keep whether or not they completed the survey. Those who completed and returned the survey were sent another $20 gift card in thanks.  

Do I have to complete the survey?

No. If you received a survey, your participation in this survey was up to you. Nothing happens if you decided not to complete the survey.  You could also refuse to answer any questions and stop at any time.   

How did you get my contact information?

The MDH Birth Defects Monitoring and Analysis program learns about individuals born with any of 60 congenital conditions, including CHDs, from the hospitals and clinics that treat pregnant people and infants. 

I have two children with a CHD. Would I have gotten a survey for each child?

If both children qualified for the survey, you would have gotten a survey for each child but they probably were sent out at different times. Survey results about your unique experience with each child are important, so information about each child should be reported separately, each in its own copy of the survey. 

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.