Is continence status associated with quality of life in young children with spina bifida?
OBJECTIVE
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.
Institute on Development and Disability, Oregon Health and Science University, Portland, OR, USA.
Kurt A
KA
Freeman
University of Southern California Center for Excellence in Developmental Disabilities at Children's Hospital Los Angeles, Los Angeles, CA, USA.
Kathryn
K
Smith
Institute on Development and Disability, Oregon Health and Science University, Portland, OR, USA.
Elizabeth
E
Adams
University of Southern California Center for Excellence in Developmental Disabilities at Children's Hospital Los Angeles, Los Angeles, CA, USA.
Stacey
S
Mizokawa
University of Southern California, Los Angeles, CA, USA.
Ann
A
Neville-Jan
D002648:Child; D002675:Child, Preschool; D005242:Fecal Incontinence / Q000150:complications / Q000523:psychology*; D005260:Female; D006801:Humans; D008297:Male; D010290:Parents / Q000523:psychology*; D011788:Quality of Life; D016135:Spinal Dysraphism / Q000150:complications / Q000523:psychology*; D011795:Surveys and Questionnaires; D014549:Urinary Incontinence / Q000150:complications / Q000523:psychology*
Spina bifida; children; continence; quality of life