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Quality of life in spina bifida: importance of parental hope
  1. Haresh M Kirpalania,
  2. Patricia C Parkinc,
  3. Andrew R Willanb,
  4. Darcy L Fehlingsd,
  5. Peter L Rosenbauma,
  6. D Kingb,
  7. Alison J Van Niea
  1. aDepartment of Pediatrics, Faculty of Health Sciences, McMaster University, 1200 Main St, W Hamilton, Ontario, Canada L8S 4J9, bDepartment of Clinical Epidemiology and Biostatistics, Faculty of Health Sciences, McMaster University, cDepartment of Pediatrics, Faculty of Medicine, University of Toronto, Toronto, Canada, dBloorview MacMillan Centre, Toronto, Canada
  1. Dr Kirpalani email:kirpalan{at}fhs.csu.mcmaster.ca

Abstract

BACKGROUND AND AIMS Prognosis in spina bifida (SB) is often based only on neurological deficits present at birth. We hypothesised that both parental hope and the neurophysical examination predict quality of life in children and adolescents with SB.

METHODS A previously validated disease and age specific health related quality of life (HRQL) instrument was posted to families of children (aged 5–12 years) and adolescents (aged 13–20 years) with SB. We measured parental hope, determined the child's current physical function, and obtained retrospective data on the neonatal neurophysical examination (NPE). Regression analysis modelled HRQL firstly as a dependent variable on parental hope and NPE (“birth status”); and secondly on parental hope and current physical function (“current function”).

RESULTS Response rates were 71% (137 of 194) for families of children, and 54% (74 of 138) for families of adolescents. NPE data were available for 121 children and 60 adolescents. In children, the birth status model predicted 26% of the variability (R2 hope 21%) compared with 23% of the variability (R2 hope 23%)in the adolescents. The current function model explained 47% of the variability (R2 hope 19%) in children compared with 31% of the variability (R2hope 24%) in the adolescents.

CONCLUSIONS In both age groups, parental hope was more strongly associated with the HRQL than neonatal or current physical deficits. A prospective study is required to determine whether a causal relation exists between parental hope and HRQL of children and adolescents with SB.

  • spina bifida
  • health related quality of life
  • hope
  • newborn

https://doi.org/10.1136/adc.83.4.293

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