Challenging prevailing wisdom that only children with end-stage kidney disease suffer physical, social, emotional and educational setbacks from their disease, research led by Johns Hopkins Children’s Center shows that even mild to moderate kidney disease may seriously diminish a child’s quality of life.
The findings, reported in the February issue of Pediatrics, suggest that earlier attention to quality-of-life issues in children with chronic kidney disease is needed.
“Even mild and moderate declines in kidney function may lead to serious physical, emotional, intellectual and social challenges,” says lead investigator Arlene Gerson, Ph.D., a pediatric psychologist at Hopkins Children’s. “What this means is we should be thinking about screening children for these challenges and intervening earlier than we once thought.”
For example, recently diagnosed children who report learning problems may benefit from help before grades drop, researchers say, noting that children with chronic diseases currently do not qualify for special education until their scores decline dramatically.
In their study of 402 children, ages 2 to 16, with mild-to-moderate kidney disease, researchers analyzed the link between kidney function, disease severity, age of onset and disease duration, on the one hand, and physical, emotional, psychological and school functioning on the other.
The researchers also compared quality-of-life outcomes between healthy children and children with early-stage kidney disease. Children with mild-to-moderate kidney disease and their parents reported worse overall outcomes on standard quality-of-life questionnaires and worse outcomes on all quality-of-life factors.
Specifically, children with early-stage kidney disease scored on average 75 out of 100 on quality-of-life measures, compared to 83 out of 100 for healthy children. The difference was especially pronounced in school functioning, where children with early-stage kidney disease scored 64 out 100, compared to 80 out of 100 for healthy children.
The study also found that the younger the child at the time of the diagnosis and the longer the child lived with kidney disease, the better the overall quality of life, a surprising finding, suggesting that as time passes children learn to cope better with their condition, the researchers say.
The researchers found that children with impaired growth and shorter stature, a common effect of their disease, had worse overall quality of life and poorer physical functioning, an indicator of the importance of early treatment.
“Timely and individually tailored treatment, be it with nutrition, salt supplements or growth hormones, if needed, can make a big difference. We cannot overemphasize the importance of early intervention in children with early stages of chronic kidney disease,” says senior investigator Susan Furth, M.D. Ph.D., a pediatric nephrologist at Hopkins Children’s.
Chronic kidney disease affects 26 million people in the United States.
The research is part of an ongoing 57-center study funded by the National Institutes of Health to study chronic kidney disease in children.
Other investigators include Alicia Wentz, M.A., and Allison Abraham, Ph.D., of the Johns Hopkins Bloomberg School of Public Health; Susan Mendley, M.D., University of Maryland; Stephen Hooper, Ph.D., University of North Carolina at Chapel Hill; Robert Butler, Ph.D., Oregon Health Science University; Debbie Gipson, M.D., University of North Carolina at Chapel Hill; Marc Lande, M.D., University of Rochester Medical Center; Shlomo Shinnar, M.D., Albert Einstein College of Medicine; Marva Moxey-Mims, M.D., NIH; Bradley Warady, M.D., Children’s Mercy Hospital, Kansas City, Mo.