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 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.

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Document Details

Document Type
Technical Report
Publication Date
Aug 01, 2005
Accession Number
ADA443705

Entities

People

  • Andrew S. Bradlyn

Organizations

  • West Virginia University

Tags

DTIC Thesaurus Topics

  • Biomedical Research
  • Consistency
  • Corporations
  • Demographic Cohorts
  • Department Of Defense
  • Descriptive Analytics
  • Diseases And Disorders
  • Health Care
  • Health Services
  • Hunger
  • Institutional Review Board
  • Instructors
  • Pain
  • Quality Of Life
  • Questionnaires
  • Reliability
  • West Virginia

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