Article
Quality of life in spina bifida: importance of parental hope
Haresh M Kirpalania, Patricia C Parkinc, Andrew R Willanb, Darcy L Fehlingsd, Peter L Rosenbauma, D Kingb, Alison J Van Niea
a Department of
Pediatrics, Faculty of Health Sciences, McMaster University, 1200 Main
St, W Hamilton, Ontario, Canada L8S 4J9, b Department of Clinical Epidemiology and
Biostatistics, Faculty of Health Sciences, McMaster University, c Department of
Pediatrics, Faculty of Medicine, University of Toronto, Toronto, Canada, d Bloorview
MacMillan Centre, Toronto, Canada
Correspondence to: Dr Kirpalani email: kirpalan{at}fhs.csu.mcmaster.ca
Accepted 1 June 2000
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.
METHODSA 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").
RESULTSResponse 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 (R2
hope 24%) in the adolescents.
CONCLUSIONSIn 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.
Keywords: spina bifida; health related quality of life; hope; newborn
© 2000 by Archives of Disease in Childhood
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