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Original article
Quality of life among children with spina bifida in Uganda
  1. Helen J Sims-Williams1,
  2. Hugh P Sims-Williams2,
  3. Edith Mbabazi Kabachelor3,
  4. Benjamin C Warf4
  1. 1 Sheffield Kidney Institute, Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield, UK
  2. 2 Department of Neurosurgery, Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield, UK
  3. 3 CURE Children’s Hospital of Uganda, Mbale, Uganda
  4. 4 Boston Children’s Hospital and Harvard Medical School, Boston, Massachusetts, USA
  1. Correspondence to Dr. Helen J Sims-Williams, Sheffield Kidney Institute, Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield, UK; helen.nye{at}cantab.net

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

https://doi.org/10.1136/archdischild-2016-312307

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    Footnotes

    • Contributors HJS-W conceived and designed the study, conducted data collection, performed data analysis, drafted the initial manuscript, revised and approved the final manuscript as submitted.

      BCW was the operating neurosurgeon, provided oversight for the study and editing of the manuscript, and approved the final manuscript as submitted.

      HPS-W conceived and designed the study, conducted data collection, reviewed and revised the manuscript, and approved the final manuscript as submitted.

      EMK conceived and designed the study, conducted data collection, critically reviewed the manuscript and approved the final manuscript as submitted.

    • Competing interests None declared.

    • Patient consent Obtained.

    • Ethics approval Institutional review board of CURE Children’s Hospital Uganda.

    • Provenance and peer review Not commissioned; externally peer reviewed.

    • Data sharing statement Additional data concerning survival of these children have already been published. Further data concerning neurological examination, family structure and quality of life are available. Data concerning renal outcomes are due to be published.