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Letter
Children with spina bifida in Eastern Uganda report a reasonable quality of life relative to their healthy school-attending peers
  1. Helen J Sims-Williams1,
  2. Hugh P Sims-Williams2,
  3. Edith Mbabazi Kabachelor3,
  4. Joshua Magombe3,
  5. Benjamin C Warf4,5
  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 Department of Neurosurgery, Children’s Hospital Boston, Boston, Massachusetts, USA
  5. 5 Harvard Medical School, Boston, Massachusetts, USA
  1. Correspondence to Dr Helen J Sims-Williams, Sheffield Kidney Institute, Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield S5 7AU, UK; helen.nye{at}cantab.net

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We recently found that male sex, large family size, urinary incontinence and hydrocephalus were all associated with poorer self-reported quality of life (QOL) among 62 children aged 10–14 with spina bifida from Eastern Uganda.1 A limitation of this study was the absence of corresponding QOL scores for unaffected Ugandan children. We therefore conducted a survey to establish reference values for self-reported QOL among healthy Ugandan schoolchildren aged 10–14.

A total of 141 healthy schoolchildren from 12 schools in Mbale district participated in a short interview to ascertain ‘health related quality of life’ using the objective Health Utilities Index (HUI3) tool,2 and a subjective measure of QOL using a visual analogue scale (VAS).3 Children were asked a single question, ‘how happy is your life?’ The interviewer indicated the 0 end of the scale (with a sad face pictured) representing ‘very bad’ and the 10 end of the scale (with a smiling face) representing ‘very good’; the child was asked to …

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Footnotes

  • Contributors HJSW conceived and designed the study, conducted data collection, performed data analysis, drafted the initial manuscript, and revised and approved the final manuscript as submitted. HPSW conducted data collection, reviewed and revised the manuscript, and approved the final manuscript as submitted. EMK and JM conceived and designed the study, conducted data collection, critically reviewed the manuscript and approved the final manuscript as submitted. BCW provided oversight for the study and editing of the manuscript, and approved the final manuscript as submitted.

  • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

  • Competing interests None declared.

  • Patient consent Not required.

  • Ethics approval Institutional Review Board of CURE Children’s Hospital Uganda.

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

  • Data sharing statement Additional results concerning survival of the cohort with spina bifida have already been published. Data concerning renal outcomes are due to be published. Further data including neurological examination, family structure and quality of life are available by contacting the corresponding author. There is little further information available relating to the healthy cohort (details of school class and some free text comments regarding quality of life) as the interviews were limited in their scope.

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