Medical Experts Gather in Atlanta to Improve Clinical Care for Children with Chronic Kidney Disease

Staff Report From Metro Atlanta CEO

Thursday, December 6th, 2018

Living with kidney disease as an adult is difficult, but living with kidney disease as a child, is almost unbearable, according to Sarah Finlayson, 51, who was just 21 months old when her kidneys failed.

"I was sick, and I didn't know why," Sarah says. "My parents never talked about it at home. I didn't know about diet and nutrition. I was living in the dark. And, I was bullied a lot in school, especially when I was sick. It was such a different experience than being an adult kidney patient."

Almost 10,000 children and adolescents in the U.S. are living with end-stage renal disease (ESRD). They are 30 times more likely to die than healthy children. Young adults with ESRD since childhood have a life expectancy of 38 years if they are treated with dialysis, and 63 years if they receive a kidney transplant. Many more have conditions that dramatically increase their risk for kidney disease and kidney failure: 1 in 10 youths in the U.S. has hypertension; 2 in 10 adolescents (average age 11) are obese.

The NKF wants to do something about these alarming statistics.

At the first ever NKF Scientific Workshop on CKD in Children on Dec. 6 and 7 in Atlanta, dozens of professionals in pediatric nephrology, patients, and their parents will gather to use recent children-focused research, the needs inherent in stories like Sarah's, and new ideas from the meeting participants to make recommendations that will improve the care for kids with the overwhelming disease.

"With this first conference, we are putting our stake in the ground to fight pediatric CKD," says NKF Chief Medical Officer Dr. Joseph Vassalotti, MD. "No child should have to live with the burden of chronic kidney disease. But if they have it, they certainly should count on us to help them live as normal of a childhood as possible."

Dr. Bradley A. Warady, MD, Director, Division of Nephrology, Children's Mercy Kansas City and Professor of Pediatrics University of Missouri – Kansas City School of Medicine, and Dr. Susan Furth, MD, PhD, Director, Division of Nephrology, Children's Hospital of Philadelphia and Professor of Pediatrics and Epidemiology Perelman School of Medicine at the University of Pennsylvania, will co-chair the conference.

"Well-controlled clinical trials in children with CKD are scarce, due to the small population and their exclusion from most therapeutic studies," Warady says. "Therefore, recommendations for clinical care in pediatric nephrology are most often based on small trials and expert opinion, with the latter commonly the product of little published evidence. The time is right to make every effort to enhance the care of children with CKD."

The conference in Atlanta will be attended by top pediatric nephrologists and other kidney-related doctors, social workers, dieticians, nurses, parents and patients and is by invitation only. They will meet for two days of lectures and breakout sessions.

"This conference is designed to bring together what we know, what we can do with what we know and what we need to know regarding the unique challenges of caring for children with CKD," Dr. Furth says.

Children with CKD often do not understand what the illness means and can become depressed as they try to sort through the demanding medical condition, especially if they think no one understands them.

Traci Kozak-Krist is a parent of a 17-year-old kidney patient. Both she and her husband gave their son one of their kidneys. Traci will also share with the professionals at the conference her experience as a parent. She wants them to know that parents and patients need details in laymen's terms.

"My husband and I are no longer afraid to ask a lot of questions," Traci says. "If we don't get it, we ask again and again. Every situation is so different, and it is very important for parents to understand exactly what is going on."

About 700 children a year receive a kidney transplant and more than 1,000 children are waiting for a donated kidney. The leading cause of kidney failure in children during 2012-2016 were congenital anomalies of the kidney and urinary tract (CAKUT), cystic, hereditary and congenital disorders, and both primary and secondary causes of glomerular disease. Urinary tract infection can also lead to kidney infections, which can forever damage the kidneys.

NKF offers a wide range of resources and programs for pediatric patients and families covering everything from how to parent a child with kidney disease to finding advice on medication and nutrition, all these resources are available free to families.