For children with kidney disease, pediatric expertise is key — but not always closed

Jaxon Green, 6, was diagnosed with kidney disease the day he was born. His illness meant that his life would depend on daily dialysis for several years. And because her family lives in rural Tamaqua, Pennsylvania, her diagnosis meant frequent two-hour trips to Philadelphia to see the nearest pediatric nephrologist—even though an adult dialysis center was just five minutes from their home.

Pediatric kidney care isn’t as simple as prescribing small doses of medication for adults, said lead researcher Dr. Sandra Amaral says. Special care is important for children with kidney disease — especially end-stage kidney disease, or ESKD — but pediatric nephrology is a specialized field. On top of that, experts are not evenly spread across the country.

Amaral and his research team sought to examine these geographic differences and their impact on children who need dialysis — a blood filtering treatment that takes over the role of the kidneys — and are waiting for a transplant.

To do this, the researchers compared how long it took children who received treatment at for-profit dialysis centers to reach certain milestones — for example, being placed on the waiting list for a kidney transplant — compared to children who received treatment at nonprofit dialysis centers. “We’re using the profit situation somewhat as a surrogate for having access to a pediatric specialist,” said Amaral, medical director of the Kidney Transplant Program at Children’s Hospital of Philadelphia, or CHOP, where Jackson received treatment.

In particular, nonprofit centers are typically in urban areas and part of large hospital systems, such as CHOP and Johns Hopkins Hospital in Baltimore. For-profit dialysis centers are more likely to be single facilities, tend not to have pediatricians on staff, and tend to serve more rural areas.

The previous study followed 13,333 children who started dialysis treatment between 2000 and 2018. Among its results:

  • Children treated at nonprofit centers were about 20% less likely to be placed on the kidney transplant waiting list than patients at nonprofit facilities.
  • Children in for-profit facilities were about 30% less likely to receive a kidney transplant than patients in nonprofit facilities.
  • In both for-profit and nonprofit facilities, the odds of being placed on a waiting list and receiving a transplant were lower for patients treated at free-standing facilities, meaning not hospital-based.

One reason behind the study, Amaral said, is that many facilities are large dialysis chains that primarily serve adult patients and whose physicians are trained in adult medicine and lack pediatric specialists. “So I think our pediatric patients may be falling through the cracks,” Amaral said.

Late childhood kidney disease is rare. According to data from the US Renal Data System, part of the National Institutes of Health, fewer than 10,000 children in the United States are diagnosed with ESKD, which is less than 1% of all people with the disease.

An editorial with the study, written by Stanford University physicians Dr. Mary Leonard and Dr. Paul Grimm, explores why children receiving dialysis are being put on the waiting list for transplants and receiving them at a faster rate than children at a nonprofit organization. profit center “This likely reflects greater clinician experience with the special needs of pediatric patients with ESKD and their families, as well as the more robust facility-level processes and structures required to care for these vulnerable patients,” they wrote.

Receiving dialysis at a nonprofit can make the process of getting on the kidney transplant list smoother because the child is already connected to a hospital system’s network, Amaral said. Pediatric nephrologists at nonprofit institutions are often affiliated with other hospital departments, including transplant teams, which can help patients better position themselves for waitlist referrals. “For patients undergoing dialysis at CHOP with chronic kidney disease, we are a one-stop shop,” says Amaral.

On the other hand, for-profit centers typically only provide dialysis care, so to start the process of getting a child on the waiting list, they have to contact other networks and transfer the child’s information. Amaral said this could be a long and slow process.

The rate at which patients are referred for transplants is one way to measure the quality of care at dialysis facilities, said Keisha Ray, an assistant professor at UTHealth Houston’s McGovern Medical School, because the centers play a major role in helping patients through the process. “They are supposed to be advocates; They are supposed to be there for navigation purposes and administration purposes,” said Ray, who is not associated with the research.

The researchers also noted that children living in the Northeast were more likely to receive dialysis care at a nonprofit facility than in other areas of the country.

Director of Pediatric Nephrology at UTHealth Houston. Rita Swinford focuses on this variable to understand why some children don’t get on the transplant list as quickly as others. “It could be that they’re not close to transplant centers and access to care is key,” said Swinford, who was not affiliated with the study.

Nationwide, there is one pediatric nephrologist for every 100,000 children, according to a 2020 report by the American Board of Pediatrics. They are most common in the Northeast. Montana, North Dakota, and Wyoming do not have pediatric nephrologists.

Three-year-old Nora Murphy, like Jackson, was diagnosed with kidney disease the day she was born. Her mother, Jillian Murphy, knows well that the difference between treatment at for-profit dialysis centers and nonprofits goes beyond the numbers.

For about a year, Nora received dialysis at a for-profit center about an hour away. It was the closest facility to the small town in Connecticut where the family lived.

Later, Nora began her dialysis treatments at home, “clinging to the machine” for at least 12 hours a day, Jillian Murphy said. The child usually did a lot overnight, when the Connecticut center wasn’t open. “So if there’s a problem with dialysis, it’s going to happen overnight when there’s no access to a dialysis-trained nurse,” Murphy said.

When problems arose, like infections, the family had to go to the hospital—about an hour away—which was not well equipped with supplies or staff knowledgeable about pediatric kidney care. Murphy took to keeping a “go” bag for dialysis equipment in case such a situation arose.

“I had to be ready to deliver to the hospital,” he said.

Last year, the family moved to Philadelphia to be closer to a children’s hospital.

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