Key points
- CHSTRONG KIDS is the Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG of KIDS.
- CHSTRONG KIDS gathers information about healthcare use, education, social experiences, and quality of life from families of children with heart defects.
- We asked thousands of families of children born with heart defects in Minnesota, Massachusetts, and Georgia between 2006 and 2021 to participate in our survey.
Overview
CHSTRONG KIDS is a survey of families of children born with heart defects. We gathered information about healthcare use, education, social experiences, and quality of life from families of children with heart defects. This information will help us identify important issues for children and adolescents with heart defects and their parents or caregivers.
CHSTRONG KIDS is organized by the National Center on Birth Defects and Developmental Disabilities at the Centers for Disease Control and Prevention (ÐÇ¿ÕÓéÀÖ¹ÙÍø), in collaboration with the following:
- Minnesota Department of Health
- Massachusetts Department of Public Health
- Boston University School of Public Health
Why is CHSTRONG KIDS important?
People born with heart defects are living longer because of better care. However, little is known about the long-term health and well-being of children born with heart defects or the needs of their caregivers. To learn more, we asked parents or caregivers of children born with heart defects to complete a brief survey.
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.
Eligibility
Parents or caregivers were asked to participate if their child met the following criteria:
- Their child was born between 2006 and 2021.
- Their child was born in Minnesota, Massachusetts, or metropolitan Atlanta, Georgia.
- Their child was diagnosed with a heart defect in the first few years of life.
CHSTRONG KIDS focuses on specific heart defects; only families whose child has one of these heart defects were asked to complete the survey.
We identified potential participants by working with birth defect programs in Minnesota, Massachusetts, and metropolitan Atlanta. As part of public health efforts in their state, these teams collect information from hospitals about children born with heart defects.
About the survey
This survey asked questions about the healthcare use, education, social experiences, and quality of life of children with heart defects, as well as the needs and experiences of their caregivers.
The CHSTRONG KIDS survey closed on April 30, 2025. We received over 1,800 completed surveys. Thanks again to everyone who participated!
Privacy of survey answers
In reports, all survey participants' answers will be combined with the answers from everyone else who took part in the survey. We will never share information that could identify any caregiver or their child.
Where to learn about findings
We will share what we learn at meetings and through reports. The survey information may help identify the unmet needs of children born with heart defects and their caregivers. Additionally, this information may help families of children born with heart defects plan for the future.