Quality of Life in Craniofacial Microsomia: Resilience Through Young Adulthood

ObjectiveWhile studies have analyzed the quality of life (QOL) in children with craniofacial microsomia (CFM), little is known about QOL in adults with CFM. This study compares QOL in adults with CFM to a comparative group using a validated questionnaire.DesignCross-sectional.SettingTertiary care center.Patients, ParticipantsAdults aged 18 years or older with CFM were contacted and administered the World Health Organization (WHO) QOL Biomedical Research and Educating Foundation questionnaire.Main Outcome Measure(s)Quality of life in adults with CFM.ResultsOne hundred and fourteen patients met inclusion criteria, 40 (35.1%) were successfully contacted, and 28 (24.6%) completed the questionnaire in 8.6 ± 2.6 min. Respondents were 23.3 ± 4.6 years old (minimum 18.4, maximum 32.8 years) with 16 (57.1%) females and 12 (42.9%) males. This cohort of adults with CFM scored lower in the physical domain (13.8 ± 1.7 vs 15.5 ± 3.2, <i>P</i> < .01), similar in the psychological (14.7 ± 1.9 vs 13.8 ± 3.2, <i>P</i> > .05), and higher in both the social (16.0 ± 3.2 vs 13.2 ± 3.2, <i>P</i> < .01) and environmental (16.8 ± 1.6 vs 11.7 ± 2.7, <i>P</i> < .01) domains than the WHO norm sample. There was no association between overall phenotypic severity or craniofacial surgical burden and QOL (<i>P</i> > .05).ConclusionsAdults treated for CFM perceive their physical health QOL to be lower than the WHO norms but report higher QOL in the social and environmental domains. Adult patients with CFM may demonstrate resilience and can live high-quality lives. These results underscore that their lives are not defined by CFM.