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.

Agency
National Institute of Health (NIH)
Institute
National Institute of Dental & Craniofacial Research (NIDCR)
Type
Research Project (R01)
Project #
5R01DE013546-05
Application #
6738101
Study Section
Special Emphasis Panel (ZRG1-RPHB-3 (01))
Program Officer
Riddle, Melissa
Project Start
2000-02-01
Project End
2006-04-30
Budget Start
2004-05-01
Budget End
2006-04-30
Support Year
5
Fiscal Year
2004
Total Cost
$520,257
Indirect Cost
Name
University of Washington
Department
Miscellaneous
Type
Schools of Public Health
DUNS #
605799469
City
Seattle
State
WA
Country
United States
Zip Code
98195
Kapp-Simon, Kathleen A; Edwards, Todd; Ruta, Caroline et al. (2015) Shared Surgical Decision Making and Youth Resilience Correlates of Satisfaction With Clinical Outcomes. J Craniofac Surg 26:1574-80
Strauss, Ronald P; Ramsey, Barry L; Edwards, Todd C et al. (2007) Stigma experiences in youth with facial differences: a multi-site study of adolescents and their mothers. Orthod Craniofac Res 10:96-103
Topolski, Tari D; Edwards, Todd C; Patrick, Donald L (2005) Quality of life: how do adolescents with facial differences compare with other adolescents? Cleft Palate Craniofac J 42:25-32
Strauss, Ronald P; Fenson, Carla (2005) Experiencing the ""good life"": literary views of craniofacial conditions and quality of life. Cleft Palate Craniofac J 42:14-8
Edwards, Todd C; Patrick, Donald L; Topolski, Tari D et al. (2005) Approaches to craniofacial-specific quality of life assessment in adolescents. Cleft Palate Craniofac J 42:19-24