Approaches to craniofacial-specific quality of life assessment in adolescents

Objective: To ascertain the domains that adolescents aged 11 to 18 years with congenital and acquired craniofacial differences (CFDs) consider important to their quality of life (QoL) to create a craniofacial-specific module. Design: Interviews and inductive qualitative methods were used to guide the development of a conceptual and measurement model of QoL among adolescents with CFDs. Setting: The Craniofacial Center at Children's Hospital and Regional Medical Center in Seattle, Washington. Patients, Participants: Thirty-three in-depth interviews with adolescents (aged 11 to 18 years), one young adult interview (age 19 years), 14 in-depth interviews with parents, one young adult focus group, one parent focus group, and one panel of researchers and clinical professionals working in the field. Results: Using the qualitative methodology, grounded theory, seven domains that adolescents with CFDs perceive are important to having a good QoL were found. Six of the domains (coping, stigma and isolation, intimacy and trust, positive consequences, self-image, and negative emotions) comprised the Youth Quality of Life Instrument-Facial Differences module. One other domain, surgery, was a salient issue for many of the youth, but not all, so it was made into a separate module, the Youth Quality of Life Instrument-Craniofacial Surgery module. This module relates to the experience of surgery, outcomes of surgery, and preferences for future surgery. Conclusions: Using an established qualitative methodology, two QoL modules specific to adolescents with CFDs were developed and are ready for psychometric validation. Potential uses of the instruments are discussed.