Health-Related Quality of Life for Pediatric NF1 Patients
Annual rept. 1 Aug 2005-31 Jul 2006
WEST VIRGINIA UNIV RESEARCH CORP MORGANTOWN
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The objective of this project is to develop an NF1-specific health-related quality of life HRQL instrument for use with pediatric patients. Semistructured interviews with children with NF1, their parents, and teachers were used to derive important domains and item content, and the first generation instrument was developed. This instrument has undergone an initial examination of its psychometric properties and the content was revised accordingly. Following this initial field trial, the second generation instrument will be tested administered in a battery of measures to furthers assess its reliability and validity as well as its applicability in a clinical trials setting. At the conclusion of this third year, we have completed all interviews, transcribed all interviews, and reviewed them for content. This content review was then used to develop the first generation instrument. The instrument was completed by 83 children with NF1 and 83 parents of children with NF1. The resulting responses have been analyzed for internal consistency and feasibility. The instrument demonstrated acceptable internal consistency coefficient alpha and was not perceived as either difficult or upsetting to complete. The final task of this project focuses on the test-retest reliability and validity of the instrument. Children with NF1 and their parents will complete the NF1-specific measure, in addition to parent- and self-report measures of behavior, functioning, and generic health-related quality of life.
- Medicine and Medical Research