Health-Related Quality of Life for Pediatic NF1 Patients
Abstract
The objective of this project is to develop a neurofibromatosis 1-specific health-related quality of life (HRQL) instrument for pediatric patients. Semi-structured interviews with children with NF1, their parents, health care professionals, and teachers will yield relevant domains and content that can be used to develop the first-generation instrument. This instrument will then be tested and revised to produce a valid and reliable measure that is sensitive to changes in clinical status. It is the author's hypothesis that the development of this disease-specific measure will significantly improve the description and quantification of the impact of NF1 and its treatment on children and families. By the conclusion of the first year, the author has obtained human subject approval from both the Army and West Virginia University Institutional Review Boards for the Protection of Human Subjects, and has recruited and completed a number of parent and child interviews. Interviews with health care providers are scheduled and teacher interviews will be scheduled and completed once school has resumed. As the data set is not yet complete and ready for analysis, findings and conclusions are not reported here. Interview guides for parents, patients, health care professionals, and teachers are appended.
Document Details
- Document Type
- Technical Report
- Publication Date
- Aug 01, 2003
- Accession Number
- ADA420866
Entities
People
- Andrew S. Bradlyn
Organizations
- West Virginia University