AURORA, Colo., Oct. 14, 2019 /PRNewswire/ -- Congenital Heart Disease (CHD) is the most common birth defect in the United States, occurring in approximately one in every 100 babies. However, information about the quality of care available, along with short- and long-term outcomes for patients, is limited and oftentimes difficult to interpret. To address this shortfall Children's Hospital Colorado and others are partnering with the Pediatric Congenital Heart Association (PCHA) in an effort to make this information more accessible and understandable to families impacted by CHD. This effort, which comes on the heels of PCHA's Transparency Summit, hosted by Nationwide Children's Hospital and attended by families, clinicians, researchers, and hospital leaders from around the country, has the goal of improving information sharing, overall outcomes and quality, and patient and family experience.
PCHA is developing a website that will provide patients and families with program-specific pediatric and congenital cardiology data combined with improved explanation and context for families to aid interpreting the data. The Heart Institute at Children's Hospital Colorado, the Herma Heart Institute at Children's Hospital of Wisconsin and The University of Michigan Congenital Heart Center at C.S. Mott Children's Hospital in Ann Arbor were among the first hospitals to share their outcomes data with the PCHA for testing and development of the website.
"Of the 42,000 babies diagnosed with CHD each year in the United States more than 13,000 will require a life-saving intervention in the first weeks or months of life," said David Kasnic, executive director of the PCHA. "My daughter was one of those 13,000 and since that time it has been my goal to improve education, awareness, research and advocacy for all those living with CHD. This website will go a long way toward ensuring parents have the information they need to choose the best care for their child."
"Children's Hospital Colorado has long been committed to transparency about our outcomes, as well as the length of time our patients stay post-surgery," said Jim Jaggers, MD, cardiothoracic surgeon and medical director of the Heart Institute at Children's Hospital Colorado. "We believe open, honest reporting and dialogue is key to improving outcomes for all patients."
The PCHA's new website is not intended to rank or compare hospitals but instead, it will provide data to support an educated conversation between families and the care teams. The PCHA will continue to add metrics and subsequent updates to the site.
"When a family receives a diagnosis, they are often overwhelmed and don't know what questions to ask," said Kasnic. "With the launch of this site, we can help families not only identify questions but also provide a centralized consumer-facing tool for getting some of those questions answered. In the end, we hope this information will lead to more informed and thoughtful conversations between families and their providers."
About Children's Hospital Colorado
Children's Hospital Colorado is one of the nation's leading and most expansive pediatric healthcare systems with a mission to improve the health of children through patient care, education, research and advocacy. Founded in 1908 and recognized as a top 10 children's hospital by U.S. News & World Report, Children's Colorado has established itself as a pioneer in the discovery of innovative and groundbreaking treatments that are shaping the future of pediatric healthcare worldwide. Children's Colorado offers a full spectrum of family-centered care at its urgent, emergency and specialty care locations throughout Colorado, including its location on the Anschutz Medical Campus, and across the region. The newly-opened Children's Hospital Colorado, Colorado Springs, is now the first pediatric-only hospital in southern Colorado. For more information, visit www.childrenscolorado.org, or connect with us on Facebook and Twitter.
About the Pediatric Congenital Heart Association
PCHA's mission is to "Conquer Congenital Heart Disease." We are accomplishing this through collaboration with patients, parents, providers, and partner organizations to improve quality and outcomes through CHD education, support, research and awareness. Founded in 2013, the Pediatric Congenital Heart Association quickly filled a niche as the voice of the congenital heart patient. We are both changing the national landscape and empowering patients and families, locally. Learn more at https://www.conqueringchd.org.
Elizabeth Whitehead, Children's Hospital Colorado