Health-Related Quality of Life for Pediatric NF1 Patients

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 children's lives.

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Document Details

Document Type
Technical Report
Publication Date
Aug 01, 2004
Accession Number
ADA433958

Entities

People

  • Andrew S. Bradlyn
  • Carole V. Harris

Organizations

  • West Virginia University

Tags

Communities of Interest

  • Biomedical

DTIC Thesaurus Topics

  • Abstracts
  • Anxiety Disorders
  • Attention Deficit Disorder
  • Biomedical Research
  • Demographic Cohorts
  • Department Of Defense
  • Depression
  • Diseases And Disorders
  • Human Behavior
  • Institutional Review Board
  • Instructors
  • Magnetic Resonance
  • Mood Disorders
  • Pain
  • Quality Of Life
  • Task Forces
  • West Virginia

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