Alexis L. Johns, Julia Zukin, Cathrine Fong, Amarjit Dass, Barbara Sheller, Hitesh P. Kapadia, Stephen L-K. Yen
This prospective longitudinal cohort study described quality of life (QoL) related to facial differences in youth with cleft lip and palate (CLP). Participants completed the Youth Quality of Life-Facial Differences (YQOL-FD) before (n=114) and after (n=95) treatment for class III malocclusion with protraction (58%) or orthognathic surgery (42%). The YQOL-FD has 5 perceptual scales (Positive Consequences, Coping, Negative Consequences, Negative Self-Image, and Stigma), scored 0 to 100 and 18 independent contextual items. Analyses included correlations and t tests for pretreatment to post-treatment and treatment outcome. Participants had a mean age of 14.8±2.9 years pretreatment and 16.9±2.4 post-treatment. They were mostly Latino (68%) males (57%) born with unilateral CLP (76%) with public insurance (62%) and low socioeconomic status (SES; 42%). QoL varied with medium positive scale means (47.6±31.2 to 59.7±23.4 out of 100) and low negative scale means (10.5±14.8 to 25.7±23.8 out of 100). Post-treatment, staring, teasing, being spoken to slowly/loudly, and having to repeat themselves significantly decreased with small effect sizes (Cohen's d = 0.24 to 0.37). While walking in public also decreased post-treatment for the total sample, the only significant change based on successful treatment outcome was increased walking in public. Correlations were small to large (r = -0.19 to 0.66) with both positive and negative associations across Perceptual Scales for medical, sociodemographic, and contextual items, reflecting the complexity of QoL. Completing treatment was associated with modest QoL improvements regardless of treatment outcome. Understanding factors associated with QoL informs screening and interventions for individuals with CLP.