The goal of this project is to explore the impacts of congenital and acquired craniofacial conditions (Cfs) on adolescents in order to develop quality of life outcome measures to evaluate effectiveness of treatments. Both Cfs present at birth or acquired up to age 18 will be included. Measures will comprise a generic quality of life instrument containing """"""""verifiable"""""""" items that can be reported or observed as reliable by others and """"""""subjective"""""""" items assessing feelings known only to the adolescent. We shall also develop a module containing measures specific to adolescents with CFCs containing both verifiable and subjective items and measures specific to the individual. To achieve this goal, specific aims are: 1. To conduct qualitative interviews with adolescents with craniofacial conditions and focus groups with: a) their primary caregivers, clinicians, and teachers; and b) young adults with craniofacial conditions, to develop a quality of life module specific to this adolescent population. 2. Using an existing generic quality of life measure for adolescents, to compare scores on this measure among adolescents with craniofacial conditions to scores currently available for adolescents with and without other chronic conditions. 3. To compare verifiable quality of life reported by adolescents with craniofacial conditions with those of their mother (or primary caretaker).
| 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 |
