Comparing children's and parents' perspectives of health outcome in paediatric hydrocephalus

This study exampled the properties of a child-completed version of the Hydrocephalus Outcome Questionnaire (cHOQ) and compared these with parental responses to the HOQ (parent version). This was a cross-sectional study in the outpatient clinics at three Canadian paediatric hospitals (Toronto, Vancouver, and Halifax). All cognitively-capable children with previously treated hydrocephalus who were aged between 6 and 19 years were eligible. Parents completed the HOQ and the Health Utilities Index Mark 3; children completed the cHOQ. A total of 273 children participated (146 males, 127 females; mean age 14y 1mo, SD 2y 7mo). Internal consistency of the cHOQ was 0.93 and test-retest reliability was 0.86 (95% confidence interval 0.78-0.92). Mother-child agreement and father-child agreement were 0.57 (0.40-0.68) and 0.62 (0.48-0.73) respectively. Agreement was higher for assessments of physical health, but lower for assessments of cognitive health and social-emotional health. There was greater parent-child agreement for older children. When there was disagreement, it seemed that children tended to rate their health better than their parents did. In older children with hydrocephalus, the cHOQ appears to be a scientifically reliable means of assessing long-term outcome. The differences in child and parent perceptions of health need to be appreciated when conducting outcome studies in this population.