The Dramatic Decline of Infections in Kids on Dialysis

Infection was once considered a normal part of life for a child on dialysis.

Today, dialysis-related infections at children’s hospitals are so rare, they’re a surprise.

“When we see one now, it’s almost like, ‘how did that happen?’” said Brad Warady, MD, a pediatric nephrologist who established the dialysis and kidney transplant programs at Children’s Mercy Kansas City in 1985.

It’s been nearly 600 days since his team has diagnosed a blood stream infection in one of the patients receiving hemodialysis (HD) in their unit.

That radical shift didn’t come from new technology or breakthrough research. It came from 57 children’s hospitals choosing to solve the same problem together through a Children’s Hospital Association collaborative.

Since the start of the Standardizing Care to Improve Outcomes in Pediatric End-stage Kidney Disease Collaborative (SCOPE) 15 years ago, pediatric dialysis centers across the country participating in SCOPE have prevented an estimated 2,766 dialysis-related infections and nearly 1,990 hospitalizations. It has also saved more than $55 million in hospital costs.

The rate of peritonitis, a serious infection in the lining of the abdomen that can occur in children receiving peritoneal dialysis (PD), has fallen 55%. Among the HD centers, the rate of access-related bloodstream infections fell 73%.

Preventing a single dialysis-related infection can save a child’s life — infection is the second-leading cause of death for pediatric dialysis patients. But infection prevention also keeps medically fragile children out of emergency departments, ICUs, and inpatient units. And when a donor kidney becomes available, it helps ensure a child is healthy enough to receive it and begin a life beyond dialysis.

Solving a rare problem together

End-stage kidney disease is rare in children. No single hospital cares for enough patients to see the full picture or answer every question on its own.

SCOPE gives hospitals a bigger view. The collaborative brings together 57 pediatric dialysis centers from across the nation to develop and test consistent approaches to care. Teams use evidence-based care protocols, called bundles, for procedures such as inserting and caring for dialysis catheters, training families, and following patients over time. They track their results and share what they learn.

The transparency is essential — and unusual in health care.

Hospitals share their results, even when they fall short. A poor outcome at one center becomes a question the entire collaborative can study. A successful practice can spread quickly instead of remaining within one hospital.

“Because it’s a rare disorder, no one center has all the answers,” said Warady, a longtime SCOPE faculty lead. “But when you take all the centers, and the experiences of all the children cared for at those centers, then you have an opportunity to really make change.”

The results have reached children well beyond the participating centers. SCOPE has published its care bundles, and pediatric dialysis programs in the United Kingdom, Japan, South America, and other parts of the world use them. Its findings also helped shape the 2024 international guidelines for preventing and treating peritoneal dialysis infections in children.

The work behind the results

The Children’s Hospital Association (CHA) created the structure that allows hospitals to work as one.

CHA convenes the collaborative, organizes workshops and webinars, and keeps five dozen centers aligned around shared goals. Its experts collect and analyze the participating hospitals’ data, giving clinical teams the evidence they need to see what works, where care varies, and what needs to change.

“CHA doesn’t just provide a hotel room for us to meet in,” Warady said. “All the outcome data we generate requires biostatistical evaluation, and we have terrific people at CHA who make that happen. Without them, the great work that has been accomplished by this   collaborative wouldn’t have been possible.”

Physicians, nurses, dietitians, social workers, and infection prevention specialists don’t have the capacity to build a national learning system alongside their daily work with children. CHA provides the organization, data expertise, and continuity that allow their experiences to become shared knowledge.

Better care at home

Much of the work to prevent dialysis-related infection happens far from a hospital.

Children receiving peritoneal dialysis undergo treatment at home, where parents take on complex responsibilities that would otherwise fall to trained clinicians. Families are taught how to perform dialysis, care for equipment, and recognize possible problems.

SCOPE recognized families as part of the care team from the beginning. Its bundles strengthened training and follow-up, helping parents provide safer care day after day.

“A great deal of the improvement in the infection rate of children on PD is due to what happens at home, not just what happens at the hospital,” Warady said. “Whatever recognition we get as clinicians, the families of our patients deserve as much or more.”

The next challenges

SCOPE is reviewing the rare bloodstream infections that still occur in children on hemodialysis. By combining cases from across the collaborative, the hospitals hope to identify which treatments can keep infections from returning.

Teams are also working to stave off one of the biggest threats to many of these children’s long-term health: cardiovascular disease. Children with kidney failure often retain excess fluid, which can raise blood pressure and place added stress on the heart and blood vessels. Because of this, patients on dialysis face a higher risk of hypertension and its long-term consequences. Successfully managing blood pressure and fluid levels during childhood can help reduce the risk of significant heart disease later in life.

Though there’s more to do, the challenges have changed because the expectations have changed: Infections that once seemed inevitable have become preventable.