Quality of life in spina bifida: importance of parental hope

Background and aims-Prognosis in spina bifida (SB) is often based only on n eurological deficits present at birth. We hypothesised that both parental h ope and the neurophysical examination predict quality of life in children a nd adolescents with SE. Methods-A previously validated disease and age specific health related qual ity of life (HRQL) instrument was posted to families of children (aged 5-12 years) and adolescents (aged 13-20 years) with SE. We measured parental ho pe, determined the child's current physical function, and obtained retrospe ctive data on the neonatal neurophysical examination (NPE). Regression anal ysis modelled HRQL firstly as a dependent variable on parental hope and NPE ("birth status"); and secondly on parental hope and current physical funct ion ("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 12 1 children and 60 adolescents. In children, the birth status model predicte d 26% of the variability (R-2 hope 21%) compared with 23% of the variabilit y (R-2 hope 23%)in the adolescents. The current function model explained 47 % of the variability (R-2 hope 19%) in children compared with 31% of the va riability (R-2 hope 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 stu dy is required to determine whether a causal relation exists between parent al hope and HRQL of children and adolescents with SB.