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Urologic Diseases Research Updates
Summer 2010

Low Health-related Quality of Life Found in Children with Urinary Incontinence

Photograph of seven smiling children.

Urinary incontinence (UI) is common in pediatric patients with chronic kidney disease (CKD) and is associated with a lower health-related quality of life (HRQOL), as reported in the October 2009 issue of the Journal of Urology.

The research, funded by a grant from the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) and conducted by lead investigator Jennifer L. Dodson, M.D., Department of Urology, The John’s Hopkins University School of Medicine, showed about 29 percent of children with CKD had UI and impaired HRQOL, which was measured using the parent and child versions of Pediatric Quality of Life (PedsQL).

The study was conducted with children enrolled in the Chronic Kidney Disease in Children Study (CKiD). CKiD is a prospective, observational cohort of children with mild to moderate CKD and is funded by the National Institutes of Health (NIH). The study began in 2003 and will continue longitudinal follow-up through 2013.

Childhood structural urological disease is the leading cause of CKD, accounting for up to 60 percent of underlying diagnosis in the 0- to 12-year age group. “Incontinence and delayed toilet training are common in children with structural urological disease and may disproportionally affect HRQOL,” Dodson and colleagues wrote.

Most children achieve urinary continence by age 5. Incontinence lasting longer is thought to be socially stigmatizing with negative implications on self-esteem and independence. Generally, children and adolescents with CKD have a significant disease burden and are known to have impaired HRQOL.

Dodson and colleagues set out to prove the prevalence and impact of UI on HRQOL in children with CKD enrolled in the CKiD cohort study. "We hypothesized that children with persistent incontinence after age 5 years would have worse generic HRQOL on PedsQL than those with normal continence," Dodson stated.

The study group consisted of 329 participants ages 5 to 16, with a median age of 12.5 years. Continence status was ascertained from a parent-completed questionnaire, HRQOL was measured using PedsQL child and parent reports, and the study was adjusted for demographic variables.

Overall, 55.5 percent of children had a urological diagnosis, with most cases being obstructive uropathy (34.8 percent), reflux nephropathy (28.2 percent), and aplastic/hypoplastic/dysplastic kidneys (27.1 percent). Nonurological diagnoses were present in 44.5 percent of participants, with focal segmental glomerulosclerosis being the most common cause of CKD (17 percent) in children.

Researchers found that the PedsQL scores for children had diminishing HRQOL as the level of incontinence worsened from toilet trained to bedwetting to not toilet trained. Parent PedsQL scores regarding HRQOL and level of incontinence yielded similar results.

Children who were not toilet trained had a low average PedsQL total score that was statistically significant and clinically meaningful. In bedwetting children, scores were generally between the scores of children who were and were not toilet trained.

PedsQL scores are reported in four categories: emotional functioning, physical functioning, school functioning, and social functioning. Physical functioning and school functioning were most affected from the child’s perspective, while physical functioning was most affected from the parent’s perspective.

Recognizing and treating incontinence may be a potentially important way to help maximize HRQOL in children with CKD. Dodson and colleagues stated, “Although the symptom of urinary incontinence is common in patients with CKD and often treated by urologists, assessing its impact on the life of the child or adolescent is not often quantified from the child point of view or by parent proxy.”

The authors also assert that future longitudinal studies may inform the timing of surgical intervention for incontinence by identifying at what age surgery should be performed to help maximize HRQOL.

More information about research projects funded by the NIH can be found by using the Research Portfolio Online Reporting Tools (RePORT) Expenditures and Results (RePORTER) tool located at The research described in this article is funded under NIDDK grant number 5K23DK078671–02.

The National Kidney and Urologic Diseases Information Clearinghouse, an information dissemination service of the NIDDK, has fact sheets and easy-to-read booklets about urological diseases. For more information and to obtain copies, visit

NIH Publication No. 10-5743
August 2010

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