Evaluation of Facial Appearance–Related Quality of Life in Young Japanese Patients With Cleft Lip and/or Palate

Abstract

Objective: (1) To confirm the reliability of a Japanese version of the Youth Quality of Life Instrument-Facial Differences Module (YQOL-FD); (2) to assess the quality of life (QoL) related to facial difference in Japanese youths with cleft lip and/or palate (CL/P) using this instrument; and (3) to examine the QoL differences according to age, sex, and cleft type. Design: A cross-sectional study. Setting: Japanese youths with CL/P were recruited through our hospital and asked to complete the YQOL-FD. Participants: Sixty-nine Japanese youths (age, 11-18 years) with CL/P. Outcome Measures: The domain scores of stigma, negative consequences, negative self-image, positive consequences, and coping in the YQOL-FD, and the reliability of such scores were evaluated. Results: The instrument showed an acceptable internal consistency (Cronbach α = 0.74-0.92) and test–retest reliability (intraclass correlation coefficient = 0.94-0.98), except for the coping domain. The individual’s domain scores were spread out from the lowest score to the high scores among all domains, thus indicating the negative and positive impacts of living with facial differences regarding their QoL may vary among individuals with CL/P. All domain scores in the 15- to 18-year-old group were significantly higher than those in 11- to 14-year-old group; there were no significant differences according to sex or cleft type. Conclusions: The instrument showed acceptable reliability, except for the coping domain. There were individual variations in QoL concerning the facial difference among Japanese youths with CL/P as measured by the YQOL-FD, suggesting the importance of individual evaluations. Perceptions were influenced by age, but not sex or cleft type.