Quality-of-life yardstick needed for children with serious urologic conditions

A small but revealing study from the Johns Hopkins Children's Center suggests that a widely used tool to measure physical, emotional and psychological functioning and well-being in children may fail to accurately gauge these quality-of-life indicators in the children with some of the most severe bladder conditions, such as spina bifida and bladder exstrophies.

Another possibility is that children with such conditions manage to adapt and have a relatively normal quality of life, researchers say. Their findings are being presented at the American Academy of Pediatrics Conference Oct. 26 through Oct. 30 in San Francisco.

Using a standard questionnaire, researchers surveyed 50 children between the ages of 11 and 17 with bladder abnormalities that can cause incontinence, among other distressing effects. Surprisingly, researchers found no real difference in quality-of-life reports between children with such chronic conditions and children without them.

“Our findings suggest that either our tool is not sensitive enough to measure well-being and functioning in children with urological conditions, or that these children somehow adapt to their disability,” says lead investigator Jennifer Dodson, M.D., a pediatric urologist at Hopkins.

Even more surprisingly, children with chronic urological conditions scored higher than healthy children in certain areas such as risk-taking, an exciting finding that may indicate that such children, in fact, do better in some aspects of daily life, researchers say.

“It is true that some children learn to cope and live with their disability, yet we are still concerned that we may be lacking a precise-enough radar to detect those who do not adapt and continue to suffer,” Dodson says.

Fine-tuning existing quality-of-life screens will allow researchers to:

• Design better ways for children to cope with their disability.
• Compare the efficacy of treatments by measuring before and after quality-of-life reports.

http://www.hopkinsmedicine.org/