A multicenter collaborative care bundle aims to standardize treatment to keep children out of the hospital due to recurring complications of this kidney disease.

As a pediatric nephrology fellow, Olga Charnaya led a quality improvement (QI) initiative designed to manage nephrotic syndrome consistently in children. She learned that nephrologists’ approaches vary in treating this disease, which due to too much protein in the urine can lead to frequent fluid buildup and swelling in the abdomen, legs and feet. In addition, patients and families lack standardized educational material to help them identify early signs of nephrotic syndrome relapse. The result is repeated visits to the hospital to manage these complications and reduce the risk of acute kidney disease.

“When it comes to nephrotic syndrome, everybody treats these patients a little bit differently,” says Charnaya. “There is no one right way.”

Charnaya’s QI project, however, showed that the need for emergency room care or hospitalization for relapses can be reduced through a standardized outpatient approach including patient education. Under the initiative, in which 75%–80% of families were provided nephrotic syndrome education, emergency department and inpatient admission counts were reduced for the first three quarters of the year, and clinic visits did not change over the period (Front Pediatr. 2019 March 29; 7:112).

When Charnaya joined the faculty at Johns Hopkins Children’s Center in 2017, Alicia Neu, pediatric nephrology director, immediately leveraged her research experience. The division had just joined the glomerular disease learning network (GLEAN), a collaborative of nine pediatric nephrology programs all sharing the goal of Charnaya’s research to reduce patients’ need for acute care. Neu thought, who better to lead the division’s nephrotic syndrome efforts than Charnaya?

“Their work was really an extension of my fellowship project, so it made sense that Dr. Neu asked me to be the QI lead for this project,” says Charnaya. “This condition can be ideally managed in the outpatient setting if we have the right kind of circumstances.”

The result was the GLEAN Acute Care Change Packet, a care bundle that started rolling out in November. Included are standardized steps for patients with new onset nephrotic syndrome for each clinic visit during the 90 days after diagnosis. For instance, the first visit should occur within five days after diagnosis and include a tuberculosis screening and enhanced vaccination. Pneumovax, a vaccine to prevent peritonitis (an infection of the lining of the abdomen), and an annual flu vaccine are administered in the clinic at the time of diagnosis. Also, the patient education packet is introduced, which includes guidance on how parents can monitor their child’s loss of protein each day by having the child urinate into a small cup and testing the urine with a dipstick.

The second follow-up visit should occur within four weeks to assess for remission of disease and to plan for alternate therapies and procedures, if needed. The algorithm also includes a weekly or biweekly nursing check-in call to monitor patients’ status and help preempt complications.

Following this GLEAN group formula, Charnaya and colleagues will assess the outcomes of this approach to help determine best practices for managing new onset pediatric nephrotic syndrome.

“We locked ourselves in a room and came up with something everyone agreed upon,” says Charnaya. “Our goal is to start with this multiprong approach and study it in a systemic way to see the best mechanism for improving care.”