Pediatric nephrologist Alicia Neu meets with young adult patient Adalberto Prins in the dialysis clinic.
Adalberto Prins, or “Al” as he likes to be known, was a teen receiving dialysis and awaiting kidney transplant in an adult unit at an outside hospital. While he appreciated the care, he did not feel comfortable as the youngest patient on the unit.
"As the only patient under 50, it was kind of weird,” says Al. “Looking at the older patients also undergoing dialysis, I thought to myself: This could be me someday. They were in worse condition than I was in.”
While Al preferred to be with adolescents and younger adults — his contemporaries — there was little he could do to change the circumstances. Across the country, age 18 is the traditional dividing line between pediatric and adult care. However, the hospital announced it was closing its nephrology service and recommended Al contact the pediatric renal clinic at Johns Hopkins Children’s Center, which not only accepted young adults but had also designed a program to address their needs.
“Our patients benefit from the fact that we’re an integrated program and see every patient under age 22,” says Alicia Neu, chief of the Division of Pediatric Nephrology. “Not all adults have the same needs. What we provide is a multidisciplinary assessment to determine the tools those young adults need to do well and get them ready for truly independent care.”
Research published in Nephrology in May 2015 showed that young adult clinics help patients develop coping mechanisms and derive psychosocial benefits such as optimism. Neu notes that clinic staff members are seeing reduced hospitalizations and emergency department visits among their young adult patients.
In assessing Al, Neu learned that he had trouble sticking to his fluid restrictions at the adult dialysis unit and — due to excessive fluid buildup — was taken off the organ transplant list.
“He was not listed for transplant because he was listed as noncompliant, but he did not have the comprehensive support and wraparound services he needed to adhere to the very complicated and difficult medical regimen,” says Neu.
Those services include behavioral psychology, renal dietician care, social work and child life, which provides young adults more focused attention than they would likely receive in an adult clinic. This is especially important for teens and young adult patients with kidney disease, as they are considered at high risk for difficulties with medication adherence and follow-up renal care.
“Individuals with kidney disease may have impairments in cognitive functioning. So although patients in this age group are considered adults, they may have difficulties in managing their medical care,” says pediatric nephrologist Rebecca Ruebner, who manages the dialysis clinic at Johns Hopkins Children’s Center.
Behavioral psychologist Carisa Parrish explains that while adults on dialysis may also suffer cognitive declines, there’s a greater impact on teens and young adults, as people over 50 with adult-onset renal disease likely have had full, normal development of their functioning without disruption.
“What we’re trying to do on the psychology side is recognize the impact on learning and cognitive function from kidney disease and prescribe services like special education and tutoring, if needed, for pediatric and young adult patients,” says Parrish. “At the same time, we educate our physicians, nurses and child life staff regarding the patient’s learning problems so all members of the team can communicate effectively with the patient and family.”
Paige Seegan, a behavioral psychologist, notes that all patients receiving pediatric dialysis treatment at Johns Hopkins are screened for cognitive impairments and intellectual disabilities to understand their limitations. Treatment recommendations and protocols are then modified and tailored to patients’ individual needs. Also, thanks to an innovation grant from the Department of Pediatrics, Seegan and pediatric nephrologist Cozumel Pruetteaim to develop a Transition to Adult Care Toolkit to aid the team in screening for neurocognitive impairments and implementing a tailored approach to health care transition for dialysis and transplant.
“We’re providing a comprehensive service to not only help patients medically but also from an educational and psychological standpoint because we have the ability to assess individual functioning and modify treatment accordingly,” says Seegan. “To our knowledge, adult nephrology does not currently have behavioral psychologists as part of their multidisciplinary teams, thus incorporating this type of screening and intervention into routine care would be challenging.”
Al agrees. After meeting with the multidisciplinary team, he was on board. Then, however, the team also learned there was another obstacle to transplant for Al: His kidney disease was associated with a bone disorder, and he might need surgery to remove his parathyroid gland. With intensive support, Neu notes, the team was able to avoid that outcome.
“His bone disease was so severe that he was at risk for parathyroidectomy,” says Neu. “We were able to control his bone disease through restricting his phosphate intake and administering medications to control his parathyroid hormone. Al did extremely well on dialysis and was able to get a kidney transplant.”
Al adds, “In the pediatric dialysis clinic, I received more attention. There were other teenagers, just like me, so I wasn’t alone on this journey,” he says. “It did make me feel better because there were more people I could relate to. It was kind of uplifting.”
Today Al is attending Morgan State University majoring in biology with aspirations of becoming a nurse anesthetist — a goal spurred by his own experience.
“Now he’s a transformed young man,” says Neu. “He went from languishing in an adult unit to doing the things he had hoped he could do.”
Parrish credits Neu with such young adult outcomes: “Dr. Neu really had the prescience to create this multidisciplinary care team by design to be proactive and representative, to optimize care for these patients once they come through the door. To me it speaks volumes that we have integrated behavioral and medical care.”