An instrument to measure the health status in 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 of parents, the 51-item questionnaire was then tested for reliability and construct validity against the following independent measures of specific components of health: Health Utilities Index, Wide Range Achievement Reading Test, Strengths and Difficulties Questionnaires, and Functional Independence Measure for Children. The HOQ took approximately 10 to 15 minutes for the parents to complete and demonstrated excellent test-retest reliability (0.93, 95% confidence interval [CI] 0.88-0.96), interrater reliability (0.88, 95% CI 0.79-0.93), and internal consistency (Cronbach alpha 0.94). Pearson correlation testing demonstrated very good construct validity between domain scores and their respective independent measures. Conclusions. The HOQ for children with hydrocephalus demonstrated excellent reliability and validity properties. This tool will be valuable for a wide range of clinical research projects in pediatric hydrocephalus.