The child, from the time of toddler-hood through school age and adolescence, is rapidly changing, not only in physical growth but in emotional and sexual growth. Chronic illness may affect these facets of the maturing child.
Kidney disease is one of many causes of chronic illness in children. Children with glomerular-based renal disease, such as nephrotic syndrome and chronic glomerulonephritis, often experience a series of body habitus changes from the condition itself and from the immunosuppressive therapy used to treat it, like steroids. These physical side effects distinguish them from their peers and take a toll on self-esteem.
Chronic kidney disease (CKD) has a very similar effect. Polyuria and poly-dipsia, with subsequent enuresis; kidney disease-related edema; CKD-related growth impairment; and devices placed in the body, including those used for feeding or dialysis access, all influence the physical, emotional, and sexual growth of these children.
A chronic illness also places particular demands on a child's time. Children wish to be with their peers in and out of school, playing sports, attending school outings, and participating in other activities with classmates and friends. Physician appointments, dialysis sessions, and home medication therapy cut into that social time. These children may become more and more isolated, making peer acceptance a bigger issue.
Data on school performance have shown that children with a chronic illness, including CKD, are at risk for impairment. The etiology of this deficit appears to be multifactorial, with the neurological side effects of the disease itself and the associated treatments, as well as school absences, all potentially playing a role.
Further research using kidney disease-related measures reveals that the condition significantly influences patient and family perception of chronic quality of life.
A Little Help from Friends
Given the condition's effects on the physical and emotional well-being of this vulnerable patient population, steps must be taken to provide intensive and ongoing psychological support of the child with kidney disease and the child's family, including siblings.
Peer groups of children with renal disease enable participants to share their experiences and support each other during this time of maturation. Similarly, kidney camps offer children with CKD, end-stage renal disease (ESRD), or a kidney transplant the chance to come together for a typical camp experience while also enjoying the fellowship of those who know exactly what it means to be a child living with kidney disease.
Those children who are frequent inpatients can derive additional benefit from hospital-based school systems that help them keep up with their studies and from interactions with child life specialists who are tuned into the concerns and needs of children with chronic illnesses.
In the last three decades, the physical health of children with progressive chronic kidney disease and end-stage renal disease has improved with advances in nutrition, medical care, and transplantation. However, there must be an ongoing research and clinical focus on the emotional impact of the illness. The child with kidney disease, like the adult with the condition, needs to be treated as a “whole person,” with the physical and emotional effects of the disease addressed.
Timothy E. Bunchman, MD, a member of the Nephrology Times Editorial Board, is Professor and Director of Pediatric Nephrology at Children's Hospital of Richmond and Virginia Commonwealth University School of Medicine. His research interests include nephrotic syndrome, acute kidney injury, and transplantation.