Health-Related Quality of Life for Pediatric NF1 Patients
Annual rept. 1 Aug 2004-31 Jul 2005
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 pediatric patients and their parents. Semi-structured interviews with children with NF1, their parents, and teachers yielded relevant domains and content that were used to develop the first-generation instrument. This first-generation instrument was field tested for psychometric properties and understandability and then revised. The revised instrument will be completed by a group of children and their parents to test its validity and sensitivity to change in clinical status. It is our hypothesis that the addition of this disease-specific measure will significantly improve the descriptiveness and quantification of the impact of NFl and its treatment on children 5 lives.
- Medicine and Medical Research