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Quality of life among children with spina bifida in Uganda

Abstract

Background Children surviving after spina bifida repair often have significant disability, the consequences of which may be more profound in low-income countries. The aim of this cross-sectional study was to measure quality of life (QOL) reported by children with spina bifida in Uganda, and to define factors associated with QOL.

Methods QOL was measured using both the Health Utilities Index (HUI3) Tool and a visual analogue scale (VAS) marked from 0 to 10. In keeping with the WHO definition of QOL, further analysis was conducted using subjective QOL scores (using the VAS). Multivariate regression was used to investigate the association between VAS scores and prespecified variables: age, sex, hydrocephalus, mobility, urinary continence, school attendance and family size.

Results Sixty two of 68 surviving children aged 10–14 were able to complete all aspects of the assessment. There was poor correlation between the VAS and HUI3 Tool (Pearson correlation 0.488). On multivariate regression, the following variables were associated with a significant change in the 10-point VAS (change in score; 95% CI): male sex (−1.45; −2.436 to −0.465), urinary continence (1.681; 0.190 to 3.172), large family size (−1.775; −2.773 to −0.777) and hydrocephalus (−1.382; −2.374 to −0.465).

Conclusions Urinary continence and family size are potentially modifiable, the former by simple and inexpensive medical management. Enhanced investment in community-based rehabilitation and support is urgently needed. Delivery of family planning services is a national priority in Uganda, and should be discussed with families as part of holistic care.

  • Neurodisability
  • Neurosurgery
  • Tropical Paediatrics
  • Congenital Abnorm
  • Patient perspective
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