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.
| 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 |
