An Instrument to Measure the Health Status of Children with Hydrocephalus: The Hydrocephalus Outcome Questionnaire

Object. In the measurement of clinical outcome in pediatric patients with hydrocephalus the condition's effects on a child's physical, emotional, cognitive, and social health are frequently ignored. The authors developed a quantitative health status measure, the Hydrocephalus Outcome Questionnaire (HOQ), designed specifically for children with hydrocephalus, which can be completed by the children's parents. Methods. The standardized steps in the development of a health status measure were followed. Item generation required involvement of health professionals and focus groups with parents of children with hydrocephalus. A comprehensive list of 165 unique health status items was thus generated. To streamline the list, questionnaires were sent to 69 sets of parents to solicit their opinions regarding the most important of these health issues, and the 51 most significant items were then selected to represent the following health domains: physical, social-emotional, and cognitive. In another cohort of 90 sets ...