PREDICTION OF QUALITY OF LIFE (QL) IN SPINA BIFIDA (SB) BY PARENTAL ATTITUDES AND PHYSICAL EXAM

We developed a QL instrument for SB, to examine the relative contributions to children's QL of Parental Life Attitudes (PLA), and Level of Lesion (LL). We hypothesised that both influenced the patient's QL. Items were generated from patients and families. Irrelevant items were eliminated by frequency importance products. This reliable (Test-Rest CC 0.7-0.9) instrument of 40 items in 10 domains, (eg. social, emotional) was validated in 2 age groups by prior hypotheses (Pearson R for 2 hypotheses 0.6 and 0.7). It was then mailed to a random sample in two age groups; 5-12y, >12y. PLA were assessed by the valid Miller Hope scale (M-H). The proxy response by parents of 5-12y subjects; and the child's own response in >12yr olds were obtained. Finally parents were asked to rate a single global score for their child's QL. Level of lesion was extracted from the patient chart. Regression analysis of QI as a dependent variable showed :To conclude, QL appears to be significantly correlated with PLA. Simple LL nor HC does not appear to greatly contribute to this measure of QL. This instrument may have clinical applications, including assessment of treatment options.