Accession Number:

ADA433958

Title:

Health-Related Quality of Life for Pediatric NF1 Patients

Descriptive Note:

Annual rept. 1 Aug 2003-30 Jul 2004

Corporate Author:

WEST VIRGINIA UNIV RESEARCH CORP MORGANTOWN*

Report Date:

2004-08-01

Pagination or Media Count:

36.0

Abstract:

The objective of this project is to develop an NF1-specific health-related quality of life HRQL instrument for pediatric patients. Semi-structured interviews with children with NF-1, their parents, and teachers have yielded relevant domains and content that have been used to develop the first-generation instrument. This first-generation instrument will be field tested for psychometric properties and revised. Finally, we will administer the revised instrument to a group of patients and their parents and 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 NF-1 and its treatment on childrens lives.

Subject Categories:

  • Psychology
  • Medicine and Medical Research

Distribution Statement:

APPROVED FOR PUBLIC RELEASE