Disability and quality of life in spina bifida and hydrocephalus


Pit-ten Cate, Ineke M., Kennedy, Colin and Stevenson, Jim (2002) Disability and quality of life in spina bifida and hydrocephalus. Developmental Medicine and Child Neurology, 44, (5), 317-322. (doi:10.1017/S0012162201002146).

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Description/Abstract

This study examined the impact of severity and type of condition and family resources on quality of life in children with spina bifida and hydrocephalus. A national UK sample of children aged between 6 and 13 years with spina bifida (n=62), hydrocephalus (n=354), and spina bifida plus hydrocephalus (n=128) were identified via the register of the Association for Spina Bifida and Hydrocephalus (ASBAH). Parents completed standardized measures of Child Health Related Quality Of Life (CQOL), family needs survey (FNS), and caregiving self-efficacy scale (CSES) as well as questions on children's health and physical ability. Results showed there were no significant differences in the overall quality of life for the three disability conditions. The overall CQOL was over 1 SD lower for those with spina bifida and hydrocephalus than for children with other physical conditions. Sex and age were not related to overall CQOL. Specific aspects of CQOL differentiated the three groups. Children with spina bifida had poorer CQOL scores on self-care, continence, and mobility/activities whilst those with hydrocephalus had poorer scores on school activities, worries, sight, and communication. Severity of condition and family resources, i.e. CSES and FNS, predicted 32% of the variance in CQOL. Associations were also found between overall CQOL and problems discernible at birth as well as epilepsy. Other factors, including those related to shunts, were not significantly related to CQOL. It was concluded that hydrocephalus is just as great a threat to CQOL as spina bifida. Beyond the general effect of condition severity on CQOL, family resources (as measured by the CSES and FNS) represent an additional influence on CQOL.

Item Type: Article
ISSNs: 0012-1622 (print)
Related URLs:
Subjects: R Medicine > RC Internal medicine > RC0321 Neuroscience. Biological psychiatry. Neuropsychiatry
B Philosophy. Psychology. Religion > BF Psychology
R Medicine > RJ Pediatrics > RJ101 Child Health. Child health services
Divisions: University Structure - Pre August 2011 > School of Medicine > Clinical Neurosciences
University Structure - Pre August 2011 > School of Psychology > Division of Clinical Neuroscience
ePrint ID: 18362
Date Deposited: 09 Jan 2006
Last Modified: 27 Mar 2014 18:08
Contact Email Address: ip@soton.ac.uk
URI: http://eprints.soton.ac.uk/id/eprint/18362

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