Abstract
PURPOSE: To evaluate the relationship between child- and parent-reported quality of life (QOL) and bowel and bladder continence among young children with spina bifida (SB).
METHODS: 104 children ages 5–12 years and one of their parents/guardians completed the Pediatric Quality of Life Inventory – Generic Form (PedsQL; parent and child) and the Quality of Life in Spina Bifida Questionnaire (QOLSBQ, parent only). Data on continence, child age, and condition-specific variables were obtained by chart review.
RESULTS: Parent and child QOL scores (on all measures of QOL) were positively correlated; parents rated child QOL lower than children's self report. QOL scores did not differ based on continence status. Total PedsQL scores were associated with age and mobility based on child report and with mobility based on parent report.
CONCLUSIONS: QOL may not be affected by continence status among young children with SB, though demographic (i.e., age) and condition-specific (i.e., functional mobility status) variables appear relevant. Additional research is needed to further evaluate condition-specific variables, other protective variables, and possible measurement issues that influence QOL in young children with SB.