More than 40,000 patients undergo congenital heart surgery in the United States every year, but their care and outcomes are known to vary significantly from hospital to hospital.

Now, for the first time in more than 20 years, dozens of pediatric cardiologists, surgeons and other health professionals have come together to develop new guidelines intended to improve heart surgery care for this population of children and teens.

The newly released recommendations were developed under the leadership of the Congenital Heart Surgeons’ Society in collaboration with 15 leading medical and surgical societies, and a committee spanning children’s hospitals from around the country. The effort was co-chaired by two faculty leads from University of Michigan Health C.S. Mott Children’s Hospital, and the University of Kentucky and Cincinnati Children’s Hospital Medical Center.

Guidelines address multiple areas of pediatric heart surgery care, including resources, personnel, surgical volumes, care processes, quality and safety.

“Pediatric heart surgery has been in the spotlight in recent years, with numerous media reports highlighting the challenges hospitals and healthcare teams face in providing the best care for these patients. These types of stories may have understandably raised concerns and created uncertainty among families of children with congenital heart disease,” said senior author Sara Pasquali, M.D., M.H.S., professor of pediatric cardiology at the Congenital Heart Center at Mott and the U-M Medical School.

“The ultimate goal for these guidelines was to bring our field together in putting forth recommendations for the gold standard of care when it comes to quality and safety at centers performing cardiac surgery in children.”

The recommendations were co-published by The Annals of Thoracic Surgery, the World Journal for Pediatric and Congenital Heart Surgery and the Journal of Thoracic and Cardiovascular Surgery.

Here Pasquali explains the goals of the guidelines and their potential impact for children who undergo cardiac surgery.

Why is there a need for new recommendations?

Pasquali: Overall outcomes for children undergoing heart surgery have improved over the past several decades but the risk of death and major complications remains high particularly for the most complex cases. Early mortality for such cases remains as high as 10-15%, with nearly a third experiencing a major complication.

Based on previous research, we also know that there is wide variability in how care is delivered to congenital heart patients across hospitals.

This includes not just the size or experience of programs, but the resources and personnel available, care processes, quality and safety measures, and numerous other factors.

Importantly, these factors can influence the outcomes patients experience, so that two children with the same type of heart disease and risk factors may experience very different outcomes depending on the center where they receive their care.

The ultimate goal for these guidelines was to bring our field together in putting forth recommendations for the gold standard of care when it comes to quality and safety at centers performing cardiac surgery in children.” Sara Pasquali, M.D., M.H.S.

While common in adult healthcare and in other areas of pediatrics, recommendations as to key components that experts advise hospitals have in place to deliver optimal care of children undergoing heart surgery have not been published for more than 20 years, and much has evolved in the field in that time.

What’s unique about how the recommendations were developed?

Pasquali: These recommendations are unique in that they are not just an update for the modern era, but also for the first time bring together all of the various members of the healthcare team involved in the complex care of these patients to collaborate and share their insights on best practices – these include heart surgeons, cardiologists, intensive care doctors, anesthesia, nursing, and many other healthcare professionals.

Taking care of children with heart disease involves complex, large healthcare teams that include the outpatient, inpatient, and procedural settings spanning the prenatal period, childhood, and into adult life.

The best care is accomplished through all team members being able to bring their knowledge and expertise to the table, and it was critical to bring the entire healthcare team and diverse viewpoints together in crafting the recommendations, the first time this has been done in our field.  

All 32 committee members and the 15 professional societies involved in the work endorsed the final recommendations, speaking to the collaborative effort and broad support of the work.

We were also able to engage patients and families in this process to incorporate their perspective, along with other national experts such as leaders from Children’s Hospital Association.

What key areas are addressed by the guidelines?

Pasquali: The recommendations cover 14 different topics including broad areas such as hospital and heart center structure, as well as the detailed clinical domains involved in the care of pediatric surgical patients – for example, perfusion, anesthesia, intensive care, imaging, and numerous others. Quality and safety aspects are also highlighted throughout the document. 

The final framework put forth by the committee consisted of two tiers of recommendations for each of the 14 domains.

The first tier was termed “essential” and consisted of recommendations for essential services and fundamental components to promote high-quality care for any pediatric heart surgery program. The second tier was termed “comprehensive” and consisted of recommendations to optimize comprehensive and high complexity pediatric heart surgery.

What’s the potential impact of these recommendations and next steps?

Pasquali: The hope is that these recommendations will be an important first step in supporting a high level of care across all types of programs and also serve as a reference to allow centers and practitioners to advocate for appropriate resources to best support their care of pediatric heart patients.

Future steps may involve program certification or other mandates as has been done in other healthcare fields.

The recommendations also encourage further collaboration across centers to share expertise and resources in working together to achieve the best outcomes, particularly for the most complex patients who any one center may only care for a handful of times in a year.

This approach has been shown to be successful among several individual centers who have already collaborated together and implemented such models, as well as across large collaborating networks or groups of hospitals who work together to conduct research and share best practices that have improved care across the country in the pediatric cardiac population.

This approach supports care closest to home where possible, while making available expertise from more experienced teams when needed, as the group placed high importance on recommendations that would promote broad access to essential care and avoid creating inadvertent disparities.

Carl Backer, M.D, of the University of Kentucky and Cincinnati Children’s Hospital Medical Center, was the lead author. Mott congenital heart surgeon Jennifer Romano, M.D., was also a co-author.

Additional authors include David Overman, M.D.; Joseph Dearani, M.D.; James Tweddell, M.D.; S. Ram Kumar, M.D., Ph.D.; Bradley Marino, M.D., Emile Bacha, M.D.; Robert D. B. Jaquiss, M.D.; Ali Zaidi, M.D.; Michelle Gurvitz, M.D.; John Costello, M.D.; Trudy Pierick, M.S.N.; William Ravekes, M.D.; James Reagor, M.P.S.; James St. Louis, M.D.; James Spaeth, M.D.; William Mahle, M.D.; Andrew Shin, M.D.; Keila Lopez, M.D.; Tara Karamlou, M.D.; Karl Welke, M.D.; Roosevelt Bryant, M.D.; S. Adil Husain, M.D.; Jonathan Chen, M.D.; Aditya Kaza, M.D.; Winfield Wells, M.D.; Andrew Glatz, M.D.; Mitchell Cohen, M.D.; Doff McElhinney, M.D., and David Parra, M.D.

Paper cited: “Recommendations for Centers Performing Pediatric Heart Surgery in the United States,” co-published by The Annals of Thoracic Surgery, World Journal for Pediatric and Congenital Heart Surgery and the Journal of Thoracic and Cardiovascular Surgery. DOI: 10.1177/2150135123119035