FACE-Q craniofacial module: Normative data from a Dutch population in adolescence and young adulthood.

Abstract

The FACE-Q Craniofacial Module is a patient-reported outcome measure (PROM) that has undergone rigorous psychometric validation in patients with visible or functional facial differences, including patients with craniosynostosis. Normative data for the FACE-Q Craniofacial Module scales are currently unavailable for unaffected controls. This study aims to collect and analyze normative FACE-Q Craniofacial Module data from a Dutch population sample. Dutch nationals aged 16-24 years without visible or functional facial differences were recruited by a third-party company for the online survey. Respondents completed FACE-Q Craniofacial Module scales from the appearance and health-related quality of life domains. Normative data were calculated as means and standard deviations and weighted based on national data. A total of 870 individuals responded to the survey, of which 160 were excluded from the analysis because of possible visible or functional facial differences. Women had significantly lower scores on many scales. Age influenced the scores for the face, forehead, head shape, and appearance distress scales significantly, with higher scores as age increases. Participants with a practical background only had significantly lower scores on the school functioning scale. Normative values for FACE-Q Craniofacial Module scales are provided derived from a Dutch sample of adolescents and young adults. This study demonstrates that sex and age had a significant influence on multiple FACE-Q scales. These normative values provide more context when interpreting FACE-Q scores in patients with visible or functional facial differences.