Objective: Compare the quality of life (QOL) of youth living with visible facial differences (FDs) with youth living with a visible nonfacial difference (i.e., mobility limitations), an invisible difference (i.e., attention deficit/hyperactivity disorder), or no known difference.
Design: An observational study of perceived QOL among adolescents with FDs (n = 56), adolescents with no diagnosed chronic condition (NCC, n = 116), adolescents with mobility limitations (ML, n = 52), and adolescents with attention deficit/hyperactivity disorder (ADHD, n = 68).
Participants: Adolescents ages 11-18 years with FDs recruited through Children's Hospital, Seattle, Washington, participated in this study. Comparison groups were from a previous study of QOL among youth with and without chronic conditions.
Main outcome measures: The main outcome measure was the Youth Quality of Life Instrument-Research Version, a generic instrument that assesses both perceptual and contextual aspects of QOL in four domains: Sense of Self, Relationships, Environment/Culture, and General Quality of Life.
Results: A MANCOVA adjusting for age, gender, and depressive symptomatology revealed that adolescents with FDs, on average, reported significantly lower overall QOL than did the NCC group. Their domain scores were similar to those of the other chronic conditions groups on all but the relationship domain. Reviewing the constituent items of the relationship domain revealed that adolescents in the ML and FDs groups reported higher scores than either the NCC group or the ADHD group on the relationship variables concerning family.
Conclusions: Adolescents with facial differences confront significant challenges to their own self-identity while experiencing higher QOL from relationships, possibly from their need to negotiate and maintain close family support.