In February 2010, California Heart Connection launched an extensive online survey of parents of children with congenital heart defects (CHD) in the U.S. The survey asked many questions about receiving the diagnosis: what was most helpful and most stressful, what diagnostic tests were performed, what information was received at the time of diagnosis, and many others. Our goal is to share the perspectives of parents with physicians to help them better communicate with parents when giving a diagnosis of CHD.
In just a matter of weeks, over 800 responses were received! We believe that this is the largest survey of its kind. We are happy to announce that the first results of this research have been published in the World Journal for Pediatric and Congenital Heart Surgery (see info below).
We'd like to thank the many support groups and individuals to who participated by completing the survey and passing on the information to others. It was truly an inspiration to see how willing parents are to tell their stories in the hope that others will have an easier road.
UPDATES:
January 2011:
Two abstracts published in January, and both to be presented at Cardiology 2011 conference in February!
The amount of data we received was astounding! To make sense of it, we have broken down the data to allow us to write several different articles. The first two article abstracts (summaries) we have created relate to receiving the diagnosis of Hypoplastic Left Heart Syndrome:
Abstract #1: The first abstract looked at how parents' optimism and perceptions are affectedy by how the option to terminate the pregnancy is presented by the physicians:
Perceptions of survival and life expectancy impacted by termination counseling for parents receiving a prenatal diagnosis of Hypoplastic Left Heart Syndrome
Abstract #2: The second abstract shows that parents receive overwhelmingly negative information on their child's prognosis, and little information on support groups is given. The term "rare" is often used, and interpreted negatively by parents receiving a diagnosis of HLHS (prenatally and after birth).
Factors associated with parents’ perceptions when receiving their child’s diagnosis of Hypoplastic Left Heart Syndrome.
These are both extremely important topics because if parents perceive a negative outcome (little chance of survival, or low life expectancy), they may not pursue treatment options. Our goal is to help improve communication at the time of diagnosis so that parents receive accurate information that is necessary to make the best choices for their child and family, including knowing that there are survivors who are doing well.
Publication: These two abstracts have been published in the World Journal for Pediatric and Congenital Heart Surgery as part of the “Abstracts from Cardiology 2011, 15th Annual Update on Pediatric and Congenital Cardiovascular Disease” 139-192, #F39, #F40. This is a new journal that is the official publication for the World Society for Pediatric and Congenital Heart Surgery, an organization for congenital heart surgeons who are literally from all over the world. The consulting editors include many pioneers and recognizable names in the field including Dr. William Norwood, Dr. Francis Fontan, Dr. Aldo Castaneda, Dr. Shunji Sano and many others.
Cardiology 2011 Conference - this is the 15th annual update on congenital cardiology organized by Children's Hospital of Philadelphia and attended by 700 pediatric cardiologists and other medical professionals from all over the US as well as internationally. Both of our abstracts were accepted for poster presentations at the conference. So, we will be able to show our findings and discuss them with the conference attendees.
Next step: We now will work on creating the full articles with details and submit them for publication to appropriate medical journals. It can take 6 months or longer once submitted for publication. We will update once we have any news on that front. We will also continue to anlayze the huge amounts of data we have obtained to look at other issues pertinent to parents, and include those with other diagnoses. In the meantime, we are thrilled that this data can help start improving communication between physicians and parents via this publication and conference presentation.
California Heart Connection is an all volunteer nonprofit organization. If you would like to help us continue these types of projects, feel free to donate and put "survey" in the memo to direct your donation. Thank you for your interest in our projects, and for helping us support children and adults with CHD.
