The Story Behind the PHIS Data

Q&A with Stephen Roth, MD, MPH, Director, Children’s Heart Center at Lucile Packard Children's Hospital Stanford

How does the Children's Heart Center at Lucile Packard Children's Hospital Stanford and Stanford Children’s Health achieve such impressive outcomes with the highest acuity cases, as demonstrated by the data released in 2015 by the Pediatric Health Information System (PHIS)?*
“One key is our willingness to take on those ‘last hope’ patients. Caring for these children often requires us to innovate. We learn something new every time we push the limits of what should be achievable. We get a little better and a little smarter each time we challenge ourselves. Ultimately, this creates new knowledge that changes our treatment paradigms, and it makes our team even more capable.”

The Heart Center’s success has led to significant growth — can you provide details?
"The demand for our services has never been greater. Our patient volume nearly doubled in a decade, from 674 inpatient discharges in 2006 to 1,114 in 2015. In less than two years, with the $1.1 billion, 521,000 square foot expansion of Lucile Packard Children’s Hospital Stanford, the Heart Center will also expand — and nearly double its inpatient beds. It’s important that no patient needing our care is turned away from the Heart Center due to lack of space.”

What’s the benefit of large patient volumes?
“You need to perform specialized surgeries frequently — as our center does — to do them consistently well. That’s especially true for complex surgeries such as the unifocalization procedure for major aortopulmonary collateral arteries (MAPCAs) in pulmonary atresia.

“We aren’t the only ones to highlight this relationship to volumes. A recent commentary in JAMA noted that ‘the highest volume centers tend to deliver the highest quality care at the lowest costs, particularly for children and young adults with the most complex heart disease.’

“Our success derives from a team of more than 250 highly specialized professionals, including cardiologists, surgeons, anesthesiologists, nurses, social workers and others. We take on everything from complex medical management to the rarest of cardiac anomalies requiring innovative surgical approaches or cardiac transplantation. We’ve also recently built one of the nation’s top adult congenital heart disease programs.”

How do your current achievements fit Stanford’s culture of innovation?
“Innovation in cardiac care is synonymous with Stanford. Norman Shumway, MD, pioneered America’s first successful human heart transplant here in 1968, and our team also performed the first pediatric heart-lung transplant in the country.

“Stanford is world-renowned for its basic science research, and we have received many prestigious grants to develop fundamental discoveries. Our researchers also place a high premium on translating their findings on pediatric heart disease into new treatments and preventive techniques.

“On the clinical frontier, we’ve also led the way in advanced bridge-to-transplant therapies for children. We have one of the largest and most experienced pediatric ventricular assist device (VAD) programs in the country, and we hold the record for the longest period of VAD support in North America, at 234 days. Our first Berlin Heart patient was, at the time of his treatment, the youngest child to ever receive this lifesaving therapy for severe heart failure. And in 2002, open-heart surgery was performed here on the smallest and youngest patient ever.

“Our commitment to discovery never stops. It’s all part of the larger culture of discovery and innovation that exists at Stanford University and in Silicon Valley, and it ties in perfectly with our goal of continuously improving patient care and outcomes.”

Who is behind Stanford’s success with new surgical techniques?
“Our surgery team is led by Frank Hanley, MD, a world-renowned surgical innovator and one of a handful of the most accomplished pediatric cardiac surgeons in the world. Many techniques he developed are now fairly routine in our Heart Center, and some are not available elsewhere. If there’s a better, safer or more efficient way to perform a pediatric cardiac surgical procedure, Dr. Hanley most likely helped improve it.

“He invented the one-stage unifocalization surgery for tetralogy of Fallot with pulmonary atresia and MAPCAs, in which the collateral arteries are surgically combined to create functioning pulmonary arteries. He has achieved a remarkable 98 percent success rate with this complex operation. He pioneered new techniques for staged operations for single ventricle defects done without a heart-lung bypass machine.

“In addition, Dr. Hanley performs many reoperations on patients from around the world. His ability to repair hearts that weren’t repaired properly elsewhere — and to do in one surgery what other surgeons would stage over months or years — is a real differentiator.”

What are some other areas of collaborative discovery within the Heart Center?
“Our team approach enabled Chandra Ramamoorthy, MD, chief of pediatric cardiac anesthesia, to reduce the risks of cardiac anesthesia in children, and helped cardiologist Gail Wright, MD, develop a simple but game-changing home monitoring program for single ventricle patients — one that has decreased patient mortality following the Norwood procedure from the national average of 15 percent to only 2 percent. We are also using implantable pacemakers programmed to synchronize the pumping function of the heart’s lower chambers in kids with poor function to improve their heart’s performance.”

“In addition, we have advanced techniques in cardiac catheterization to safely deliver catheter-implanted heart valves into the most vulnerable patients, including an 8-month-old infant who was the youngest ever to undergo this procedure.

“And together with scientists at the Stanford Cardiovascular Institute, ongoing research is designed to understand the origins of congenital heart disease and pediatric heart failure. Plus, we’re currently taking part in 20 clinical research trials in pediatric cardiovascular medicine.”

What’s next?
“Some believe that after 70 years of surgical innovation for congenital heart defects, we are nearing the peak of the pyramid of surgical procedures and techniques. We think that the next phase of major advances in our field will come from the biological sciences and include breakthroughs in areas such as tissue engineering, regenerative medicine and genomics.

"Heart problems in children and adult survivors of congenital heart disease aren’t going away anytime soon, so we need to focus on approaches other than existing surgical procedures to improve treatment of these conditions. It’s going to be an exciting new era, and we are positioning ourselves to be leaders both in quality outcomes and innovation going forward.”

By the Numbers: 2015 at the Children’s Heart Center

  • More than 600 heart surgeries, and another 500 surgeries at Heart Center partner programs: UCSF Benioff Children’s Hospital (Oakland, Calif.); Sutter Memorial Center (Sacramento, Calif.); and Valley Children’s Hospital (Madera, Calif.)
  • 20 heart transplants
  • 16 ventricular assist device implants
  • 8,238 transthoracic echocardiograms
  • 20 clinical trials under way
  • 250 faculty and staff members, including:
    • 8 cardiothoracic surgeons
    • 36 faculty cardiologists
    • 11 cardiac anesthesiologists
    • 150 cardiac specialist nurses
    • 3 radiologists dedicated to cardiac imaging

* Data Source: Pediatric Health Information System (PHIS), 2013 and 2014. The PHIS hospitals are 47 of the largest and most advanced children's hospitals in America, and constitute the most demanding standards of pediatric service in America. The Children’s Hospital Association developed PHIS to provide a rich data source for clinicians to conduct comparative effectiveness studies that affect hospitalized children.