A disease-specific health status measurement for children with hydrocephalus

Abstract

<p>Hydrocephalus is a common condition of childhood. Attempts to measure the health status of children with hydrocephalus have traditionally relied on surgical outcomes, non-specific generic health outcomes, or very specific neuropsychological measures. This work describes the development of a new disease-specific health status outcome measure for children with hydrocephalus--called the Hydrocephalus Outcome Questionnaire (HOQ). This work begins with a discussion of several methodological issues relevant to health status measurement, highlighting certain points of controversy. This is followed by a review of the methodology and the results of various stages of development of this new health status measure. This includes the stages of concept development, item generation, item reduction, reliability testing, and validity testing. The final section describes the use of some different approaches to providing interpretability to the new outcome measure. This work was approved by the Research Ethics Board at the Hospital for Sick Children, Toronto. The result of this work was the 60-item Hydrocephalus Outcome Questionnaire. It demonstrated very good psychometric properties and was well received by the parents of children with hydrocephalus, who are the primary respondents. It is hoped that this will serve a useful role as a much-needed outcome measure for pediatric hydrocephalus.</p>