Living with a craniofacial condition: Development of the Craniofacial Experiences Questionnaire (CFEQ) for adolescents and their parents

Objective: To develop a new instrument (the Craniofacial Experiences Questionnaire, CFEQ) to measure both stressors and positive aspects of living with a craniofacial condition from adolescent and parent perspectives, and to examine its validity and reliability. A secondary aim was to explore experiences reported according to age, gender, and diagnosis. Design: Self-report and parent report questionnaires (CFEQ, Youth Self Report [YSR], Child Behavior Checklist [CBCL], Behavioral and Emotional Rating Scale [BERS]) were completed by adolescents with congenital craniofacial conditions and their parents. Participants: Fifty adolescents with craniofacial conditions and 55 of their parents. Results: Internal reliability of the stressor and positive aspects scales was acceptable (.81 to .92) but was lower for some stressor subscales (.50-.86). Higher stressor scale scores were related to poorer adjustment (CBCL r = .55, YSR r = .37). There were no consistent differences in the stressful or positive experiences of young people with craniofacial conditions according to gender or age. There were no differences in stressors reported according to diagnosis. Conclusions: The CFEQ shows promise as a clinical and research tool for investigating the stressors and positive experiences of young people with craniofacial conditions. Consistent with the literature on chronic pediatric conditions, there were few differences in experiences of young people according to diagnosis. Furthermore, the lack of gender or age differences supports the need for clinicians to comprehensively assess the experiences of young people regardless of demographic variables.