A pediatric collaborative marks 10 years of empowering patients and families and sharing best practices.
When Brad Warady faced a serious health issue at the age of 9, he decided then he wanted to devote his life to helping children. He’s done just that in a pediatric career spanning four decades. But he says his role as one of the lead faculty of the Children’s Hospital Association’s Standardizing Care to Improve Outcomes in Pediatric Endstage Kidney Disease (SCOPE) collaborative holds a special place in his body of work.
“You can spend a career in medicine and not get this kind of opportunity,” says Warady, M.D., director, Division of Pediatric Nephrology; director, Dialysis & Kidney Transplantation, Children’s Mercy Hospital in Kansas City, Missouri. “It's pretty unique.”
Clarity of communication key to successful outcomes
SCOPE began 10 years ago with a goal to decrease or prevent infections in infants, children and adolescents on peritoneal dialysis (PD) using large-scale collaboration to identify and spread effective interventions across pediatric care settings.
Since its launch, and SCOPE's expanded effort to reduce infections associated with hemodialysis (HD) as well, participation has more than doubled, with 56 institutions now representing “virtually every large pediatric dialysis program—and many small ones—across the nation,” according to Warady.
What makes it special, Warady says, is an uncommon level of openness among members to share their experiences—both positive and negative. “Centers that have been successful in the initiative have shared their data, as have centers that have been less successful,” Warady says.
“The end goal is to have everybody be successful, and the transparency between centers and the sharing of experiences has been an important contributing factor to the achievement of significantly decreased infection rates in PD and HD patients.”
Quantifiable metrics and results
The numbers demonstrate the results of the collaborative’s efforts. As of July 2021, SCOPE’s impact includes:
- Prevention of more than 1,500 dialysis-related infections.
- Nearly 900 dialysis-related hospitalizations prevented.
- Roughly $27 million saved in hospital costs resulting from the prevention of dialysis-related infections.
However, the real effect of the program goes beyond the numbers. “The effect on a child’s life and their family's lives by avoiding infection and associated hospitalization—you can't attach a cost to that,” says Alicia Neu, M.D., chief, Pediatric Nephrology; medical director, Pediatric Dialysis and Renal Transplantation, Johns Hopkins Children’s Center in Baltimore, Maryland, and a SCOPE lead faculty.
“We're keeping them out of the hospital, and in turn, they're able to stay in school and their parents are able to continue to work because they're not having to drop everything and come into the hospital to treat the child's infection.”
Care bundles form program’s foundation
The SCOPE collaborative developed patient and dialysis catheter care bundles based on evidence and expert opinion-based recommendations designed to target best practices for dialysis patients across the entire care team. Notably, and particularly in the case of the PD patient, the SCOPE bundles expanded the care team to include caregivers in the home setting—an uncommon approach at the time, according to Neu.
Including parents as key members of this quality improvement initiative—from initial training to follow-up reviews—strengthened the partnership between the dialysis team and parents in the child’s medical management and emphasized how high-quality at-home care is an essential part of the strategy to enhance a patient’s wellbeing.
“If I'm doing a procedure or a nurse is doing a procedure, we're required to demonstrate competency every year—but we weren't doing that with people carrying out the procedures in the home,” Neu says. “It was a novel concept that then became part of the standardized care and, quite honestly, it is the follow-up bundle that emphasizes a variety of aspects of long-term care, which has contributed the most to the reduction in infection that we've seen in the children on PD.”
Practices such as these and other clinical aspects of SCOPE have now been incorporated into pediatric dialysis programs internationally.
Participants drive collaboration
Warady and Neu agree that none of SCOPE’s work would be possible without the commitment and passion of all involved. “Those of us who have been doing this for a long time will admit this is one of the most important projects we've ever been a part of,” Neu says. “We have had examples of both physicians and nurses who have moved institutions and because of the success of the project, have championed to get SCOPE at their new institution.”
Additionally, participating institutions continue to dedicate resources to the project even though most centers have only a handful of patients directly affected by the program. “Everyone in the world of pediatric care is in it for the same reason—to provide the best possible care to children,” Warady says.
“To their credit, hospitals recognize activities that help meet that goal and are looking beyond just their three or five or 15 patients. They recognize that the collaboration we have had in SCOPE over the last decade has been productive and will benefit the children they care for—as well as kids nationally and globally.”