Article

OBJECTIVE: To determine which clinical (health status) and nonclinical
(demographic) factors may affect perceptions of quality of life in children with
spina bifida and their parents. DESIGN: A prospective study by using a validated
questionnaire. SETTING: A multidisciplinary spina bifida clinic at a pediatric
tertiary referral center. PATIENTS: Thirty-three children with spina bifida aged
5-18 years and 41 parents of children with spina bifida aged 2-18 years completed
questionnaires after informed consent was obtained. METHODS: The Peds QL 4.0
Short Form 15 questionnaire was administered to children with spina bifida and
their parents. Additional data were collected, including socioeconomic status,
self-reported ethnicity, insurance status, ambulatory status, presence of shunted
hydrocephalus, and continence. All completed questionnaires were included in the
final analysis. RESULTS:
Self-reported physical and psychosocial health scores
for patients in our study were lower than previously published scores from
healthy children. Patients with a shunted hydrocephalus had significantly lower
self-reported physical health scores compared with those without shunted
hydrocephalus (61.4 versus 39.3; P = .015). Self-reported physical health score
in those with shunted hydrocephalus improved with age (Spearman rho = 0.42; P =
.017). Shunted hydrocephalus remained significant on multivariate analysis.
Ethnicity, insurance, socioeconomic status, ambulatory status, and urinary and
fecal continence were not associated with self-reported physical or psychosocial
scores. Parent-reported scores were not associated with any of the variables of
interest. There was excellent correlation between parent-reported and
self-reported psychosocial health scores (Spearman rho = 0.636;
P < .001) but not
physical health scores (Spearman rho = 0.023; P = .905). CONCLUSIONS: Shunted
hydrocephalus has a negative impact on the perception of quality of life, an
effect that may be attenuated by age. Further study and more-specific measurement
tools are needed to better understand health-related quality of life in children
with spina bifida.
CI - Copyright (c) 2013 American Academy of Physical Medicine and Rehabilitation.
Published by Elsevier Inc. All rights reserved.

Langue : ANGLAIS