Quality Life Among Youth with Craniofacial Conditions

University Of Washington, Seattle WA

Investigators

Linked publications & trials

Abstract

The goal of this project is to describe the impact of congenital and acquired craniofacial conditions (CFCs) on the health and quality of life of adolescents, and to validate CFC-specific quality of life outcome measures for evaluating effectiveness of treatments. This project builds on the prior qualitative phase and includes CFCs present at birth or acquired up to age 18. To achieve this goal, specific aims are: 1. To describe and compare the quality of life associated with craniofacial conditions and facial differences in adolescents aged 12 to 18; 2. To validate the Youth Quality of Life Instrument-Facial Difference Module (YQOL-FD); scale structure, test-retest-reliability, discriminant and convergent validity and responsiveness to change; 3. To evaluate the ability of the YQOL-Facial Surgery Attitudes Module (YQOL-FS) to predict changes in quality of life (as assessed by the YQOL-R genetic measure and YQOL-FD) associated with treatment; and 4. To measure preferences of adolescents and their professional and family caregivers for further treatment (surgery and therapies) of facial differences, and to compare their perspectives on the point of "diminishing returns." A total of 200 adolescents with congenital facial differences, and 140 with acquired conditions will be recruited for the study from four clinical sites in the U.S., and one in the United Kingdom. Adolescents and their parents will complete questionnaires at baseline, and gain at 1-2 year clinical follow-up.