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Disability and quality of life in spina bifida and hydrocephalus

Ineke M Pit-ten Cate1, Colin Kennedy, Jim Stevenson

  • 1Centre for Research into Psychological Development, Department of Psychology, University of Southampton, Highfield, UK. ip@soton.ac.uk

Developmental Medicine and Child Neurology
|May 30, 2002
PubMed

Insights

Children with spina bifida and hydrocephalus experience significantly lower quality of life (CQOL). Family resources and condition severity are key factors influencing CQOL in these children.

Area of Science:

  • Pediatric Health
  • Quality of Life Research
  • Disability Studies

Background:

  • Spina bifida and hydrocephalus are complex conditions affecting children's health and development.
  • Understanding factors influencing quality of life (CQOL) is crucial for effective support.
  • Previous research has explored various aspects of CQOL in pediatric populations.

Purpose of the Study:

  • To investigate the impact of condition severity and type on CQOL in children with spina bifida and hydrocephalus.
  • To examine the role of family resources, including caregiving self-efficacy and family needs, in influencing CQOL.
  • To identify specific aspects of CQOL that differ among children with spina bifida, hydrocephalus, and both conditions.

Main Methods:

  • A national UK sample of children (aged 6-13) with spina bifida, hydrocephalus, or both was recruited via the Association for Spina Bifida and Hydrocephalus (ASBAH) register.
  • Parents completed standardized measures: Child Health Related Quality Of Life (CQOL), Family Needs Survey (FNS), and Caregiving Self-Efficacy Scale (CSES).
  • Data were analyzed to assess relationships between condition characteristics, family resources, and overall/specific CQOL scores.

Main Results:

  • No significant differences in overall CQOL were found among the three disability groups.
  • Children with spina bifida and hydrocephalus had significantly lower overall CQOL compared to children with other physical conditions.
  • Specific CQOL aspects varied: spina bifida impacted self-care, continence, and mobility; hydrocephalus affected school activities, worries, sight, and communication.
  • Condition severity and family resources (CSES, FNS) predicted 32% of CQOL variance.
  • Problems at birth and epilepsy were associated with overall CQOL, while shunt-related factors were not.

Conclusions:

  • Hydrocephalus poses a significant threat to a child's quality of life, comparable to spina bifida.
  • Beyond condition severity, family resources significantly influence a child's quality of life.
  • Targeted support addressing family needs and enhancing caregiving self-efficacy may improve CQOL for children with these conditions.

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