Younger, More Complex Kidney Transplant Patients Enjoy Excellent Outcomes

Increasingly, patients in our kidney transplant program are younger and have more complex medical conditions. Yet many of them go on to enjoy an excellent quality of life, reports medical director David Hooper, MD, MS.

“Half of our patients this year were 5 years old or younger,” Hooper says. “Over the last two years we’ve had continued growth in referrals. The number of children we evaluate has grown by 300 percent, and clinic volume has expanded by 30 percent.”

Hooper attributes some of the growth to excellent outcomes they have achieved for babies born with defects of the kidneys and urinary tract. The program’s close collaboration with the hospital’s fetal care and complex urology programs, together with transplant surgery, enable interventions for some babies while in utero, and dialysis as soon as they reach the NICU. The children receive transplants once they are large enough to accommodate what is usually an adult size kidney, generally in their second year of life.

Overall, Hooper says, despite their medical complications, children like this who make it to kidney transplantation often have quite good outcomes. He points out that the program’s first patient to make it to transplant after fetal surgery is now 9 years old. “He’s now running around and going to school. He enjoys a pretty normal life.”

Beyond the collaborations that enable the transplant program to care so well for these children who need dialysis early in life, Hooper points to improvements they have put in place to ensure that transplanted children survive and thrive.

One improvement was aimed at increasing access to kidney transplantation for those children who need it. The longer a child has to wait for a transplant, the longer on dialysis and the greater the negative impact on his or her health.

By mapping the process, identifying which steps took longest and putting interventions in place, the team reduced the number of days it took from the moment of receiving a referral for kidney transplantation to making the decision on the patient. When they started the process, it took an average 200 days; now, it takes an average of 50 days.

Another improvement is designed to reduce acute rejection rates.

“We know that kidney transplants are lost when patients don’t take their medications,” Hooper says. “So we wanted a way to identify what gets in the way of patients not taking their medicines.”

Together with colleagues in the Adherence Center and Information Services at Cincinnati Children’s, the team developed a standardized assessment form with that in mind. The tool is directed primarily at teenagers, who are particularly prone to not taking medication, but it works equally well for the parents of younger transplant patients.

“When patients come into clinic they get a checklist. It lists barriers such as, ‘I don’t like the taste of the medication; I forget to take it; I don’t like the side effects.’ When a patient identifies a barrier, there is a well-defined treatment pathway that the provider uses to talk about how to overcome that barrier,” says Hooper.

Addressing this information is crucial because patients who identify a barrier to taking medications are three times more likely to reject their kidney in the next year, he explains.

Results with using the assessment form have been exceptional. Half of all patients reported a barrier to taking medication.

“We’ve been able to show a reduction in rejection rates of 50 percent, and it’s been sustained for the last 18 months. We’re pretty excited about it.”

More Accomplishments

Improving Renal Outcomes Collaborative Continues to Expand

With more than 20 centers nationwide sharing information, this group represents and supports nearly 40 percent of all pediatric kidney transplants in the U.S.

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Better AWAREness of Acute Kidney Injury Could Transform Intensive Care

Data from a globe-spanning study may spark a new way of thinking about preventing an often-overlooked cause of death for children receiving intensive care.

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