Survey: Parents and Public Reporting

Your experience matters and your input is very valuable!

Read on for important information.  You can access the survey here.

Over the last two years, the Conquering CHD has been working hard to achieve public reporting and transparency of congenital heart disease outcomes data.  Some of our activities have included our Questions to Ask Your Provider, presentations at national conferences, and our Transparency Summit Series.  Each step of the way, we have relied on parents like you to help guide us.

To learn more about the parent perspective on public reporting, the Children’s Hospital of Philadelphia (CHOP), in conjunction with the Conquering CHD, Mended Little Hearts, and Sisters by Heart, has developed a survey for parents of children with congenital heart disease.

This survey will help us better understand what information is important for parents making decisions about medical care for their children.  It will also help answer questions about the ideal format for presenting this information, essential facts that should be displayed, and potential barriers parents may face when trying to find this information,

In this survey, we are asking parents of children with congenital heart defects, including parents of children who died from their disease, about the information you want to have when deciding which hospital and physician you choose for your child’s care.  By surveying a broad number of parents, like you, we can better inform our future efforts at public reporting as we work with physicians, hospitals and policy makers to improve access to this important information.

The survey is web-based and completely anonymous.  We estimate that you will need about 20 to 30 minutes to complete all the questions. You do need to be 18 years of age or older to participate.

Let us emphasize that you are free to either participate in this survey or to decide to not participate.  No one will know whether you have decided to participate or not participate.  Participating in the survey, or not participating, will have no impact on the care that your child will receive.

You can access the survey at the following link: https://redcap.chop.edu/surveys/?s=NARY88E93E

Thank you very much for your help with this important project!

Should you have any questions or concerns about the survey or your participating, please do not hesitate to contact the survey team at Children’s Hospital of Philadelphia via email:

Mallory Irons (ironsm@email.chop.edu)

J. William Gaynor, MD (gaynor@email.chop.edu)

Chris Feudtner, MD PhD MPH (feudtner@email.chop.edu)