Affiliations: Institute on Development and Disability, Oregon Health
and Science University, Portland, OR, USA | University of Southern California Center for
Excellence in Developmental Disabilities at Children's Hospital Los Angeles,
Los Angeles, CA, USA | University of Southern California, Los Angeles, CA,
USA
Note: [] Corresponding author: Kurt A. Freeman, ABPP. Institute on
Development and Disability, Oregon Health and Science University. 707 SW
Gaines, Portland, OR 97239, USA. Tel.: +1 503 494 0360; Fax: +1 503 494 6868;
E-mail: freemaku@ohsu.edu
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.
Keywords: Spina bifida, continence, quality of life, children
