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."

It is based on a similar survey conducted with adults living with a congenital heart defect (CHD). The information from the CHSTRONG KIDS survey will help 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.

Page contents

• What questions are included in the survey?
  • Why are caregiver experiences included?
• 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. will I get a survey for each child?
• CHDs that qualify for the CHSTRONG KIDS survey
• Contact information

What questions are included in the survey?

This survey asks questions about both the caregiver and the child born with CHD regarding their healthcare use, education, social experiences, and quality of life.

Why are 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?

If you received a survey in the mail, please consider filling it out. 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 should take about 20 minutes to complete. As a thank you, we send each family a $5 gift card to keep whether or not they complete the survey. If you send us your completed survey, we will send another $20 gift card.

Do I have to complete the survey?

No. If you received a survey, your participation in this survey is up to you. Nothing will happen if you decide not to complete the survey. You can refuse to answer any questions and you can stop at any time.

How did you get my contact information?

The MDH Birth Defects Monitoring and Analysis program actively collects information from hospital and clinic charts of pregnant people and infants diagnosed with over 60 congenital conditions, including CHDs.

I have two children with a CHD. Will I get a survey for each child?

If both children qualify for the survey, you will get a survey for each child. Since we are sending out surveys in batches you might receive the survey for one child and then a few weeks later receive the survey for your other child with a qualifying CHD. We are mailing out surveys in batches roughly by birth year, starting with younger children and then shifting to older children. Please only answer the survey for the child listed in the introduction letter for that survey. Survey results about your unique experience with each child are important, so only include information about the specified child in each 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.