Parents lack critical information about frequency of surgeries done on children

BEL AIR, Md. (InvestigateTV) — On a Make-A-Wish trip to Hawaii, Juliet Pace was able to free herself from the challenges she faces in her regular routine. The escape to paradise sent her ziplining through tropical forests and kayaking through crystal blue water without a care in the world.

It was a far cry from life back in Maryland, where a medical condition she’s had since birth lingers in the background. Juliet, 15, was born with sickle cell disease, a blood disorder that hospitalized her eight times in her first year of life and many times since.

The family has come to accept the reality of more hospital stays in the future, and even the potential for surgery down the road. Juliet’s mom, Bethany, says the condition doesn’t define her daughter. But coping with it isn’t easy.

“Seeing your child in a hospital for anything, you know, automatically spikes my anxiety. It feels like an out-of-body experience in a lot of ways,” Pace said.

The Paces have trusted Johns Hopkins Hospital in Baltimore with Juliet’s treatment since the beginning. Mom Bethany says the hospital’s experienced specialists are an obvious draw, but so is the open communication she’s experienced at the facility – and not just from the doctors who treat her daughter.

Her experiences have made her more than just the mom of a patient. Pace is also an advocate for other families. She wants them to be armed with the kind of information she can find.

At Johns Hopkins, the hospital independently posts healthcare quality and safety data on its own website and participates in surveys that detail performance metrics for the public to see. Bethany has also been given the opportunity to use her own voice as part of a special council at the hospital that’s designed to help improve quality and safety.

“When there is that transparency, they’re saying we are taking accountability for the care that we provide, and we care deeply about being really great at the care that we provide,” Pace said.

But when it comes to critical care for children, there’s something Bethany - and moms and dads across the nation - will struggle to find even at the most transparent hospitals: data about pediatric surgical volume.

That key metric shows how often hospitals perform specific surgical procedures, but it often is shielded from the public, leaving parents in the dark about a critical piece of information that could impact decisions about who they trust with their children’s lives, InvestigateTV has discovered.

‘This is an area where the quality movement has left children behind’

Experts consider surgical volume a key metric in healthcare quality and safety, with studies showing that hospitals and physicians who perform higher numbers of certain procedures are linked to better outcomes.

Volume statistics for adult procedures at specific hospitals are widely known for a number of surgeries, including hip and knee replacements, bariatric weight loss surgery, as well as certain open-heart procedures and some tied to cancer treatment. But those same kinds of statistics aren’t publicly available for the vast majority of pediatric surgeries.

“There’s essentially no volume reporting for pediatric surgery. For the most part, parents are making blind decisions with the lives of their children,” said Dr. Peter Pronovost, the chief quality and clinical transformation officer at University Hospitals in Cleveland.

Pronovost, who is considered one of the nation’s leading experts in healthcare quality and safety, says the data parents should know about surgical volume does exist, but it isn’t publicly shared.

That pediatric data, InvestigateTV discovered, is collected by the Agency for Healthcare Research and Quality, or AHRQ, an arm of the Department of Health and Human Services.

“They purchased it from the states. But the data use agreements between the state and AHRQ precludes them from making this data public, which is just horrific,” Pronovost said.

The agreements relate to the Kids’ Inpatient Database, put together by the Agency for Healthcare Research and Quality. “The KID is the largest publicly available all-payer pediatric inpatient care database in the United States,” according to AHRQ, with information about millions of pediatric patients released from hospitals every year, including procedure data from specific hospitals across the nation.

The information within the kid can be used to create estimates and look at national trends. But an InvestigateTV analysis of the agreements that govern the data shows use of any information that identifies hospitals is strictly prohibited. The language even says hospitals cannot be contacted to verify their own reporting to the database.

“I think it’s probably from decades-old agreements when maybe transparency - we weren’t as forward, and they didn’t want to show hospital volumes or volumes of the individual surgeons. But now we’re in a very different place, and transparency is and should be everywhere,” Pronovost said. “And if you have information that could help parents make informed decisions, my golly, why wouldn’t you release it?”

AHRQ ignores questions about lack of transparency on pediatric surgical volume

InvestigateTV repeatedly contacted the Agency for Healthcare Quality and Research – emailing specific questions about why pediatric surgical volume information isn’t publicly disclosed and how the agency answers concerns from experts like Pronovost, who believe it’s time to knock down barriers to transparency in children’s medicine. Those questions went unanswered.

InvestigateTV also repeatedly asked the Children’s Hospital Association, which represents more than 200 pediatric hospitals, to talk with our team about transparency in pediatrics. It declined.

When sent specific questions, the organization’s spokeswoman responded with an emailed statement, saying:

“We work to improve care and amplify impact, because when we do right by kids, everything else follows: better outcomes, smarter systems, and a healthier nation for us all. Health care decisions are best made in collaboration between a patient, family, and their doctor. Given that, we are committed to following health care data protection laws and regulations that have been in place to protect children’s health and privacy for a number of years.”

Non-profit aims to pull back the curtain on pediatric critical care data

But an organization called Leapfrog is trying to help parents get access to some information that could impact decision-making about their children’s care. For years, the non-profit has collected voluntary surveys from hospitals coast to coast, gathering data on safety and quality and making them available for public viewing.

InvestigateTV analyzed responses to Leapfrog and found that two-thirds of the more than 3,000 general hospitals that were surveyed submitted responses to the organization. Pediatric hospitals have been far less responsive, according to our analysis.

“As a parent, I will go to the end of the earth to find the right hospital for a child who needs critical care. And yet very little is available to me to choose among those hospitals,” said Leah Binder, Leapfrog’s president and CEO.

Leapfrog’s surveys ask pediatric hospitals for some specific data related to the care of children, including surgical volume for one specific infant heart procedure and whether the facilities have physicians who are specially trained to treat children.

InvestigateTV analyzed Leapfrog’s survey responses dating back to 2023 and found that more than two-thirds of the approximately 90 pediatric facilities surveyed by the group declined to respond.

That includes some of the biggest names in pediatric medicine: St. Jude’s, Children’s Hospital of Philadelphia, and Children’s National in Washington, D.C. InvestigateTV repeatedly contacted those hospitals for specific comment about participation in the Leapfrog survey and supplied other questions, but did not receive responses.

“The impact is that many parents are entrusting the lives of their children to hospitals that they don’t know how they’re doing. And that’s very unfortunate,” Binder said.

InvestigateTV canvassed dozens of children’s hospitals nationwide, asking about Leapfrog survey participation and where information and data are posted for parents who want to know critical information that could impact children’s care.

Our team repeatedly heard that while transparency is a priority, limited resources make responding to Leapfrog’s survey challenging, diverting significant time away from patient care.

Many hospitals told us they voluntarily report data to registries that track specific conditions or surgeries and supply information to state agencies or medical associations. But that information often is readily accessible to the public.

Some facilities contacted by InvestigateTV indicated they have questions about Leapfrog’s methodology and prefer to participate in a survey conducted by U.S. News and World Report, a media company that ranks hospitals but doesn’t publicly post specific data or statistics about surgical volumes or other metrics.

The responses show there’s little uniformity when it comes to pediatric data reporting – leaving a patchwork of information for parents and young patients like Juliet Pace to seek out and wade through.

“I would just wish that everybody could be equal and that, like, we can all get the same information,” she said.

Patients and families could help with push for more transparency

The push for more public information about surgical volume and other quality metrics is something Juliet’s mom, Bethany, could help with. Her role with the Patient and Family Council at Johns Hopkins Hospital gives her a unique opportunity, a seat at the table where decision-makers seek feedback.

“I’m part of this because it is open for talking about the good, talking about the bad, talking about how we can continue to get better as a hospital,” Pace said.

Both Pace and Dr. Pronovost agree that if those patient and family councils at hospitals across the country band together, they could have real power. Together, they could make a unified push for mandated pediatric data reporting in places parents can see, so they can make informed decisions about what they value most: their children.

“All of us have something that is part of our life, you know, we all figure out how to navigate it. And it’s with care, data and information and resources that really go to how well we do that,” Pace said. “So that is absolutely what I am focused on for Juliet and creating the life that she’s meant to have.”